Tag Archives: caretaking

The mental health needs of older caregivers

By Lisa R. Rhodes January 6, 2023

a woman standing behind an older man with one hand on his shoulder and the other arm hanging down holding the man's hand

Luca Santilli/Shutterstock.com

Caregiving can take many forms. A woman in her 50s takes care of her husband who has a life-limiting disease. An adult child cares for an aging parent. Grandparents raise their grandchildren because their adult child is struggling with substance misuse.

A recent State of Aging and Health in America Data Brief on caregiving (published by the National Association of Chronic Disease Directors and the Centers for Disease Control and Prevention) refers to the growing number of caregivers that are providing assistance to their loved ones as “an important public health issue” and notes that middle-aged and older adults in particular provide a substantial portion of the informal or unpaid care in the United States.

Research shows that older adult caregivers are shouldering more demands today than they did five years ago. According to the report Caregiving in the U.S. 2020: A focused look at family caregivers of adults age 50+ (conducted by the National Alliance for Caregiving and AARP), the number of individuals caring for older adults (those 50 years or older) has increased by 7.6 million caregivers since 2015. And more than half of these caregivers are age 50 and older themselves, with 20% being 65 and older.

In addition, many older adults are caring for their grandchildren. A U.S. Census Bureau report on children’s living arrangements noted that of the children under the age of 18 who did not live with a parent, 53.2% lived with a grandparent in 2019.

Caregiving has the potential to enhance one’s quality of life by increasing one’s satisfaction and strengthening familial relationships, but it can also be stressful and negatively affect people’s mental health. Sara Kerai, a licensed professional counselor (LPC) who has worked with older caregivers for more than a decade, says that many of her older caregiving clients — those age 50 to 64 — struggle with psychological distress due to caregiver stress.

Caregiver stress is “unwelcomed stress and anxiety associated with taking care of a loved one when you don’t feel prepared,” Kerai explains. “Caregiving is both physically and emotionally demanding. There’s no downtime. There are no vacation days, no sick days, no federal holidays.”

The added responsibilities of caregiving that suddenly become a part of these clients’ lives leave them with less time to take care for themselves, which contributes to their stress. The counselors interviewed for this article agree that cognitive behavior therapy (CBT), dialectical behavior therapy (DBT) and psychoeducation can help older caregivers manage negative emotions and help them develop the skills they need to maintain their health and wellness.

Feeling depleted

Tending to aging parents, spouses, adult children or growing grandchildren can leave older caregivers feeling exhausted, overwhelmed, anxious and depressed.

“The caregivers that I meet, by the time they’re sitting in front of me, they’re just very depleted, emotionally overwhelmed,” says Kerai, who owns a private practice in Grand Rapids, Michigan.

Older caregivers may be caring for aging parents or spouses who have a long-term terminal or chronic illness, such as cancer, dementia or Parkinson’s disease, or they may be caring for adult children who have become incapacitated due to a disabling accident or illness. They may also be caring for grandchildren whose parents are wrestling with a mental illness or substance misuse.

For these caregivers, “it feels like a tremendous amount of responsibility, all the while [they’re] waiting for the next shoe to drop,” Kerai says, because they “are expecting bad news medically or are worrying about when their loved one might have a setback or take a turn for the worse.”

Older caregiver clients often have to handle their own work and family responsibilities while also performing caregiving duties such as scheduling medical appointments, taking their loved one to the doctor and advocating for proper medical care, and managing medications. They are also tending to their loved one’s personal hygiene needs and keeping abreast of their loved one’s financial and legal matters.

Caregivers of children may be dealing with teachers, school administrators and coaches; coordinating resources from community and social service agencies; transporting children to and from recreational activities; cooking meals; or handling custody issues through the courts.

Adrianne Trogden, an LPC-supervisor and an assistant professor of counseling at the University of the Cumberlands, says that older caregivers are “burning the candle at both ends” because they often have to manage their caregiving duties while also working a full-time or part-time job. “When they come home [from work], they’re never really just ‘off,’” she explains. “They have to come home and do more work.”

And these caregivers are often “on call all the time,” says Trogden, a member of the American Counseling Association. “They can be called at any moment for an issue related to the one they’re caring for,” which often leaves clients wondering what will happen to their loved one if something comes up while they are at work, she adds.

Mary Pierce, an LPC at Marriage & Family Health Services in Eau Claire, Wisconsin, says some clients feel they are carrying an extra burden. They sometimes tell her they feel as if they are living life for two people.

Caregivers may also feel unprepared for the amount of work involved in caring for someone else. “A sense of overwhelm may come with the initial diagnosis [of an illness] as they scramble to set up routines doctor visits, household help with groceries, etc.,” she notes.

Then as caregiving becomes more routine, the feelings of exhaustion and anxiety can lead to a deep sadness, Pierce continues. “After a time, depressed mood is more common, as the reality of the situation hits.” This is when clients realize “this is going to go on for a while,” she adds.

Although mental health conditions may arise as a result of caregiver stress, Pierce, an ACA member who specializes in family caregiving, says she is careful not to pathologize caregiving.

“It is a process of adjustment, and in most cases, a diagnosis of ‘adjustment disorder’ applies, with or without anxiety, depressed mood or both,” Pierce explains. “I also want to assess if anxiety or depressed mood predated the caregiving experience for [a] client.”

In addition to feelings of fatigue, anxiety and depression, these caregivers often experience trauma. “It’s traumatic to change a spouse’s diaper [or] to see your parents in a frail or diminished state,” says Kerai, who offers telebehavioral health services to clients in Michigan, Virginia, Maryland and Washington, D.C.

Jennifer Stuckert, an LPC and clinical director at Restoration Counseling of Atlanta, says it is not uncommon for older caregivers to feel residual trauma from how or when their loved one passes away.

The degree to which the loved one is suffering also matters. Clients “need a safe place to process their internal angst about this suffering that they’re going through and the suffering that their loved one is going through,” Stuckert says.

It can be traumatic to not know what will happen next, she admits. “You never know how long this person is going to be in a declined state and how long your life will be this way.”

The costs of caregiving

Older caregiving clients often feel they must put their life on hold, which may result in feelings of isolation and guilt. Trogden, president of the Association for Adult Development and Aging, a division of ACA, works with several clients who are in their 50s and 60s and are raising their grandchildren, who range in age from an infant to the early teens. A lot of these clients “thought they were moving into retirement, to relax … and have less responsibility,” she says. But now these clients have increased responsibilities and many never expected to have to raise their grandchildren.

Many of these clients contemplate putting their plans for retirement on hold because of this new role as caregiver, Trogden continues. Some even wonder if they will ever be able to retire or if they’ll have to continue to work longer than they planned to care for their loved ones. And this can lead to grief over what they have given up to care for their loved one, she says.

These clients are often overwhelmed, Trogden adds, because they’re not able to take time off to see friends, enjoy their hobbies or even engage in self-care activities.

Kerai also finds that clients may feel a sense of isolation. Caregiving is a solo responsibility for many older caregivers, she explains, and they often feel disappointment, anger and resentment because other family members cannot or will not help.

“People’s worlds become very small,” she says. “They can’t socialize or do the things that were restorative for them.”

Some clients wrestle with guilt, Pierce notes. For example, she says clients may feel guilty for wishing their caregiving responsibilities would end because they know what that means — the decline or death of a loved one.

Older caregivers can also experience anticipatory grief. Kerai says that many of her clients wonder what will happen when their loved one’s condition gets worse, and they ask her, “How can I prepare for this?”

Pierce, who has treated caregivers and their families for a decade, often introduces the concept of anticipatory grief to clients who may not be aware of the term. In addition, as a parent or partner declines, there is ongoing grief, she says. Pierce had one client who described their grief as “losing my husband little by little, day by day.”

Helping to alleviate stress

Trogden, who is the chief operating officer for Counsel NOLA, a group counseling practice in New Orleans, finds DBT distress tolerance skills to be a helpful way for clients to learn to manage stress in a healthy way. She often teaches clients the STOP skill, which, she explains, is an acronym that stands for:

Stop: Take a pause and don’t immediately react to what’s going on. Maintain control of your body and emotions.
Take a step back: Get some distance from the situation and take a few deep breaths. Walk away for a moment if possible.
Observe: Pay attention to what is going on inside of your body and around you. Do a body scan to notice any tension in your body. What are other people around you doing?
Proceed mindfully: Take a moment to think about the possible outcomes of this situation and respond, rather than react. What is the outcome you want with this situation? What are the consequences of what you might say or do to respond?

Trogden works with her clients to develop ways they can apply the acronym in their daily lives.

Trogden also uses the five senses of self-soothing exercise with older caregivers in session to help them learn how to create a sense of peace and calm. She walks clients through the exercise in session and asks them to tell her what they see, hear, smell, taste and touch. For example, she may say to clients:

What do you see around you? Go look at something peaceful or visually interesting. Watch people around you, go outside in nature, look at art, and so on.
What do you hear? Listen to what is going on around you and the various noises you can hear. Listen to music that you find calming or to sounds in nature, for example.
What can you smell? Maybe smell a cup of coffee, light a scented candle or put on your favorite scented lotion.
What can you taste? Drink or eat something you like and see if you can tell the different ingredients. Eat or drink slowly to absorb and focus on all the flavors.
What can you touch around you? Touch something soothing nearby. For example, pet a domestic animal, touch a soft fabric or run your hands under warm water.

Trogden then assigns clients this exercise as homework to practice outside of session both when they are feeling overwhelmed and when they aren’t.

CBT exercises can also help clients manage feelings of frustration and stress. Kerai once worked with a middle-aged woman who was caring for her husband who was also middle aged and had been diagnosed with a life-limiting illness. This client was feeling frustrated about how to handle her husband’s frustration about his symptoms and prognosis, Kerai recalls.

In situations such as this, Kerai finds the “worst case scenario” exercise helpful because it can help older caregivers identify their negative thoughts and predictions and consider new ways of thinking about the situation. Here is an example of how this exercise might go in session:

Counselor: What are you most concerned about right now?
Client: When my loved one takes a turn for the worse, everything is going to fall apart. It’s going to be a mess.
Counselor: What is the story you are telling yourself? What are you expecting is going to fall apart?
Client: That everything is going to explode!
Counselor: I understand that it feels scary right now. In that statement, I hear you making some negative predictions about the future. The truth is we don’t know how this will all unfold. I do know you have a lot of people who love and care about you. You have been proactive about getting the support you need. Let’s talk about what we can control and what we can’t.

Kerai used this exercise with the woman who was concerned about her husband’s diagnosis and helped her figure out possible resources, such as a home health aide or a family member, who could assist her in caring for her husband.

Sometimes the caregiver may find that their loved one’s personality or behaviors are changing, Kerai notes. For example, the woman Kerai worked with noticed that her husband had become more irritable or demanding. Kerai says the following questions can help older caregivers gain insight into the mindset and behavior of their loved ones to understand how their world has also changed due to the caregiving relationship:

What do you think your loved one is asking for when they become demanding?
What do you think your loved one is afraid of?
What medications does your loved one take?
Have you noticed any side effects from the medication?

Kerai says these questions helped the client understand that medications (such as steroids) may have been causing her husband’s personality to change and that as a person with a life-limiting disease, he could be operating from a place of anxiety about his own mortality. The client’s husband, for example, may have been concerned about whether his wife would remain with him until the end.

To improve the client’s communication with her husband, Kerai suggested the client check in with him in the morning before starting her workday to discuss what the day would look like and to provide reassurance about when his needs would be met. This simple change helped her feel less angry and frustrated by his attempts to regain some control over his life, Kerai says.

Pierce also uses CBT techniques to help older caregivers identify their cognitive distortions, such as black-and-white thinking and exaggerating the negatives and minimizing the positives. She uses an exercise she calls “unhelpful versus helpful” thoughts to help clients identify both types of distortions. This exercise, Pierce says, helps older caregivers recognize negative or self-defeating thoughts so they can replace them with more positive, hopeful thoughts about their circumstances and their relationship with their loved one. For example, a client may think, “This will never end.” Then they can counter this negative thought with a more helpful one such as “This is not forever, just for now.” Or maybe a client worries that things will never be the same between them and their loved one. Then, they could reframe this unhealthy thought by saying, “We are both still here and I can make the most of the time we have left together.”

Dealing with anger

Stuckert uses psychoeducation to help older caregivers, especially those caring for aging parents with memory loss or physical impairments, process feelings of anger. “There is exasperation in these situations,” she explains. “No one gives you a rule book, so people are very overwhelmed.”

When clients lament how they must often repeat conversations multiple times or help their parent to complete simple daily tasks, Stuckert tries to help them understand that their parent’s brain is in decline — something that many people experience as they age.
Stuckert says she normalizes the feelings that adult children may have about their parents and helps them develop realistic expectations about the downward trajectory of their loved one’s remaining years.

She works to help clients “build compassion” for their parents and tells them, “You’re going to have to have gracious compassion for them. … Your parent is going through a normal life stage.” This is particularly important when agitation and frustration are high, she adds.

Stuckert also helps older caregivers understand that their parent’s mental decline may be gradual and that their parent may be struggling with fears and uncertainties about the end of their life, such as how they will die or how much pain they will be in. “They don’t like losing their power,” she explains. “They want to keep their agency as long as they can.”

Stuckert recommends counselors read Judith McKay, Matthew McKay and Peter Rogers’ book When Anger Hurts: Quieting the Storm Within, which helps people recognize their angry thoughts and find healthy ways to relate to themselves and others. She uses several exercises from this book to help caregivers recognize and understand what provokes their anger.

First, she says, counselors can have clients ask themselves the following questions when they are feeling angry:

Are there more effective strategies than anger for reinforcing others to meet my needs?
What were my trigger thoughts?
What can I do to meet my own needs to reduce my stress?
What stresses underlie my anger?

Counselors can then help older caregivers reframe angry thoughts and realize that although they may not be able to change their circumstances, they can change the way they respond to stress and develop alternative ways to relate to their loved ones and meet their own emotional needs, Stuckert says.

Pierce helps adult children resolve issues with their aging parents who have dementia by striving to keep the peace and acknowledging their feelings of grief.

“We talk about not engaging in arguments, but agreeing and then redirecting the parent,” Pierce explains, and “also not correcting the person with dementia to avoid making them feel worse about forgetting or being confused.”

Naming and processing grief

Older caregivers experience grief over the changes that caregiving can bring to their plans or dreams and their relationship with their loved ones. Offering empathy, unconditional positive regard and being genuine — the essence of a person-centered approach — is key in supporting clients in the grieving process, Pierce says.

Pierce often asks clients to use a self-rating exercise to help them process their grief and accept the changes that caregiving brings to the relationship. She once worked with a male client in his 60s who was caring for his wife who was diagnosed with frontal temporal dementia. Pierce asked him to think about his life before his wife was diagnosed and rate how much he felt like a husband. He said, “100%.” Then she asked him how much he felt like a husband three years after the diagnosis; he said, “50% husband, 50% caregiver.” And the client said that when his wife experienced a significant decline, he felt like he was “99% or even 100% caregiver.”

“Giving caregivers a framework to acknowledge the changes in their circumstances and, for some, to be able to let go of expectations that the care receiver will be able to continue being a full partner” is helpful, Pierce says.

Pierce works to help older caregivers not only acknowledge what has been lost but also recognize what remains in the relationship. For example, one of her former clients — a woman in her 60s — moved her husband who had dementia into a care facility after she was no longer able to continue caring for him at home. The woman felt sad that she and her husband were losing their connection and “forgetting the good times” they once shared, Pierce recalls.

“At my suggestion, the wife took her husband out for a drive and revisited local places where they had good memories,” Pierce says. “She reported that at the end of the afternoon, when she brought him back to the facility, he hugged her and said, ‘Thank you for today. This meant a lot to me.’”

Counselors can also help clients process their grief when they lose their loved one. John Self, an LPC at the Wellspring of Life Counseling & Play Therapy Center PLLC in San Antonio, once helped a woman in her 50s deal with the grief of losing her mother after being her sole caregiver for a year. When the client’s mother was diagnosed with cancer, her siblings refused to help, so she had to care for her mother while also working full-time until her mother was placed in hospice care.

“She would take off weeks at a time to care for her mom,” Self recalls. “She almost lost her job. It was a lot for her.”

This client spent most of her savings to care for her mother, Self says, so he helped her get financial assistance under the Family Medical Leave Act. This allowed her to work at a reduced rate for three months until her mother’s death.

Self also used the four tasks of mourning, developed by psychologist J. William Worden, with this client to help her with the grieving process. The four tasks include:

Accept the reality of the loss
Process the pain of grief
Adjust to a world without the deceased
Find an enduring connection with the deceased in the midst of embarking on a new life

This client, who was a Christian, found her faith helpful in accepting her mother’s death, Self says, so together they examined the woman’s spiritual values and the belief that her mother was now in heaven.

To help her process the pain of grief, Self encouraged her to journal her feelings and look through family photo albums to recall childhood memories and family gatherings as a way to honor her mother. The client also started scrapbooking and working with crafts to find ways to alleviate her feelings of loss.

The client shared with Self how difficult it was to continue living in her home because her mother’s bed and wheelchair were still present, but she couldn’t bring herself to remove them. Self reassured the client that over time as her grief began to dissipate, it may become easier for her to remove the objects from the home and adjust to this new life without her mother.

Self says he also encouraged the client to think about all the wonderful things her mother did as a parent and to find ways to celebrate her life. “With most patients, I try to give them some hope,” he says, and help them realize that their caring for their loved one can help to build their own resilience.

The need for psychoeducation and self-care

Despite the stresses of caregiving, the love and sense of duty most older caregivers feel toward their loved ones motivate them to provide caregiving for as long as they can. However, the counselors interviewed for this article say this devotion often leaves older caregivers with less — or no — time to care for their own health and wellness.

According to the Caregiving in the U.S. 2020 report by the National Alliance for Caregiving and AARP, caregivers’ health has been declining since 2015, and one in five caregivers who are 50 years or older say their role as a caregiver has made their health worse.

Some older adults are so embedded in their role as a caregiver, Kerai says, that they “don’t feel they have permission to take care of themselves.” They sometimes feel they “can’t leave their loved one’s side,” she adds.

The difficulty in taking care of oneself, or the reluctance to do so, is troublesome for older adults who may be facing the onset of chronic illnesses, such as high blood pressure and diabetes. Trogden says she talks to her clients about the importance of staying on top of their health, and she teaches them mindfulness techniques, such as deep breathing, to help them feel a sense of calm and to de-escalate from their daily stress.

Trogden also reminds her clients that they can’t be there for somebody else if they’re not there for themselves. She encourages older caregivers to do small, simple things to take care of themselves such as taking a bath, putting on body lotion, taking a walk or doing a mindfulness meditation because these activities can make a big difference.

Pierce talks to older caregivers about the sympathetic nervous system response and the need to try to calm themselves when they feel stress or anxious and unable to take a break. She teaches clients to pay attention to how they feel in their bodies — Are they tense? Is their heart racing? Are their hands shaking? — so they can know when they need to use a self-care activity, such as stepping outside and taking a few deep breaths or taking a mindful walk and noticing the sensation of their feet on the ground, to calm themselves. She also encourages clients to check in with their bodies after they engage in the self-care activity so they can notice the difference in their body.

Stuckert helps older caregivers brainstorm self-care activities using the “self-care menu” worksheet created by the Seattle School of Theology and Psychology’s Resilient Leaders Project. The self-care menu has a section with four blocked-out periods of time (five minutes or less, 15 minutes or less, 30 minutes or less, and 60 minutes or more) where caregivers can plan and write down a self-care activity.

For example, a client can do a whole body stretch for five minutes; listen to two of their favorite songs for 15 minutes; get a pedicure or a haircut for 30 minutes; and attend a religious service or read a couple chapters from their favorite book for an hour.

The counselors interviewed for this article agree that psychoeducation can help to encourage older caregivers to build a support network of resources, including respite care and caregiver support groups, to help them juggle their caregiving duties while also tending to their own health and well-being.

Psychoeducation about geriatric care is crucial for both clients and counselors. “For many counselors, it is difficult to help clients find resolution during the grieving process,” Self says.

Stuckert agrees that psychoeducation is essential to helping older caregivers. “The more they [counselors] understand the struggle of the aging process,” she says, “the better they’ll do” serving this clientele.

Lisa R. Rhodes is a senior writer for Counseling Today. Contact her at lrhodes@counseling.org.

Opinions expressed and statements made in articles appearing on CT Online should not be assumed to represent the opinions of the editors or policies of the American Counseling Association.

When counselors grieve: Witnessing a loved one approach death gracefully

By Suzanne A. Whitehead March 21, 2022

My wonderful, dear, precious mother is dying. She has terminal metastatic cancer, adenocarcinoma, that began in her colon and quickly metastasized to her liver. She first started experiencing periodic stomach pains in early 2019, but numerous tests and exams divulged no significant results. We were concerned for her but felt relieved when all tests came back negative. It is with her gracious permission and indominable spirit that I relay our story.

When the global COVID-19 pandemic shut the world down in March 2020, we sheltered in place as most Americans did and prepared to ride out what we hoped would be a short storm. I was teaching remotely from home, and as the coordinator of a counselor education program, I was blessed to be able to make the final decisions on that front. As May 2020 rolled around, my mother complained off and on of more stomach discomfort, but it would quickly fade and was nonspecific. On May 18, however, she woke with great discomfort in her belly. A trip to the doctor led to more tests, and we were finally able to schedule a barium swallow exam for early morning on May 20.

My mother endured the pretest liquids with great difficulty but was eventually able to have the test completed. She came home with us, feeling exhausted and very nauseated. The vomiting soon ensued, and she became increasingly uncomfortable. Our alarm grew after making frantic calls to the doctor throughout the day and taking a resultant trip to the emergency room in a neighboring city.

After my mother had a thorough examination, a surgeon was consulted, and a blockage was located in my mother’s large intestine. Papers were hurriedly signed, and we kissed my mother goodbye. Due to COVID-19 restrictions, no one could stay with her. My mother was 94 at the time and scared to death to face the operating room alone.

The surgeon called us close to midnight. My mother had made it through the surgery OK and (miracles as well) did not need to have a stoma or colostomy bag put in. The surgeon believed he had been able to dissect the entire tumor but would have to test the margins of course. This was a slow-growing tumor, he told us, and my mother had probably had it for some time. Due to her advanced age, even if it ever spread in her colon, she might actually pass away from something else entirely. So, not to worry, he said.

Recovery in the hospital was a nightmare. The first night went well, but my mother had sadly aspirated the next morning and wound up with pneumonia. The medical staff was trying its best to help her, but that becomes trickier with advanced age. My mother is a bit hard of hearing, has short-term dementia-related memory loss and can be a very feisty Italian lady. She stands all of 4 feet, 4 inches and has severe osteoporosis that has resulted in very pronounced scoliosis of her spine. Therefore, she cannot, lie flat and must have the head of her bed propped “just so” to even sleep. I learned later that the medical staff had called the crash cart twice for her, almost losing her in the process.

I tried frantically to get answers as my mother seemed to linger but not improve. Several days went by, and numerous “hospital specialists” were assigned to her case, but none realized all the nuances of her interwoven symptoms. My first career in life, before I became a substance use disorder counselor, school counselor and university professor, was as a respiratory therapist. The names of some of the equipment have changed over the years, but not a person’s anatomy and metabolic processes. I was therefore able to keep up with the physicians regarding the dire circumstances of my mother’s respiratory acidosis, lowered PO2 oxygen levels in her blood, and the infiltrates and atelectasis in her lungs.

The head medical staff finally acquiesced on my mother’s eighth day there, and they let me visit her. My counselor training helped profoundly in working with everyone in her care. My mother was quite in distress when I first arrived, but as is often the case with family visits, began to thrive. The nursing staff said I had to stay put in her room, and they brought me meals and provisions. By the second day, I had her up walking. I swapped places with my grown daughter, and by the fourth day, they said we could take my mother home. It was indeed a miracle that we were able to wheel her out of the hospital.

Twists and turns

We took the rest of the summer of 2020 to help my mother recover. It was slow going, but she gained strength each day. It was decided that the fall of 2020 would be taught remotely at my university, so I looked for a wonderful place for her to convalesce. I was incredibly fortunate to find a condo for rent right on the ocean, and we spent the month of September sitting by the ocean, taking long walks on the beach, watching the boats sail by, and loving every minute of life.

My mother was feeling stronger by October and was even cooking again, which is her favorite pastime. A monthly checkup raised some concerns, and more tests were ordered. To our heartbreak and dismay, the cancer had massively invaded my mother’s liver and was voracious. Her oncologist suggested chemotherapy medication that she could take at home but, sadly, it would perhaps prolong her life by only a few weeks or months. There was no cure or other treatment.

My irascible and feisty mother said she wasn’t ready to give up, so we began the ritual of chemotherapy pills at home just after Thanksgiving. She seemed to tolerate that well until just a few days after Christmas. The pills had reduced the size of her tumors, but she became quite toxic to the point of having constant diarrhea, vomiting and not eating.

January 2021 rolled around, and my mother was still quite ill from the chemotherapy. With incredible strength of will and sheer grit, she fought on and finally began to feel a little better by the end of the month. Her oncologist introduced the chemotherapy again, but at a lower dosage, and she tolerated that well.

By June, her tumor marker blood tests showed that they had been reduced by over half. That was indeed remarkable in and of itself. Her oncologist had thought in October 2020 that my mother might possibly live up to another year; by June 2021, she seemed to be thriving. Incredibly, we were able to bring her to Hawaii that month, where I was presenting at an international conference that had been postponed from the year before. We were so very blessed to have that conference occur during the brief “sweet spot” when COVID-19 seemed to diminish a bit and the delta variant had yet to arrive. The trip was glorious. Several family members joined us, and we were able to visit many places we had gone to when we lived on Oahu a few years previously.

Early July brought another jolt of reality when another severe colon obstruction landed my mother in the hospital. After six days of intense, painful therapy and tests, my mother was slated for additional surgery. Her physician was extremely cautious and tentative about her prognosis. Literally, at the eleventh hour, just before her scheduled surgery, the treatments they had given her began to work. Another miracle had occurred! Three days later, we were again able to wheel my mother out of that hospital, without more surgery. It was a day to celebrate.

Sadly though, by September, her blood tests revealed that her tumors were growing again with a vengeance. The painful decision to stop the chemotherapy was agreed upon, because by then it was doing her more harm than good. Fall 2021 also had its extreme joys, however, as we were able to celebrate our daughter’s very tiny, but beautiful, wedding on Nov. 6. My mother was able to stand up for her as the matron of honor; it was a poignant and blessed day for all.

The long goodbye

The holidays have now come and gone, and again I marvel at my dear mother’s strength and perseverance. Despite our fastidious precautions, with all of us getting the vaccines and booster shots, COVID-19 entered our home in early January, and we all became infected with the omicron variant. It is a true testament to my mother’s will that even COVID-19 cannot stop her. Her symptoms resembled that of a bad cold — something else she could have done without. Thankfully, however, she made it through that horrible hurdle too.

Painful realities remain though, and we all agreed in late January that the time had truly come to begin the hospice process. I have never had hospice services for a loved one before, and there was a lot to learn. Some of the realities were quite painful, such as that my mother cannot see her established physicians any longer. We’ve also been asked several times to consider a “Do Not Resuscitate” order; we’re not quite there yet. I am reminded once again that death and dying is a process, not an event.

A plethora of nurses, social workers, delivery workers (bringing oxygen tanks, shower supplies and comfort meds) and a minister for spiritual support have come to visit. The very slow reality of the long goodbye is now at hand. As a counselor and university professor, I “know” about self-care, the many aspects of grief and loss, the need for continued support, and the existential angst one feels when realizing that nothing else can be done. It is an empty, hollow feeling that begets profound sadness.

I am extraordinarily blessed with wonderful family support. My husband and I have three grown children (two of whom are nearby and one six hours south), a wonderful son-in-law and daughter-in-law, and two amazing grandchildren. My university colleagues have been immensely supportive, as has my faculty and staff. I have the dearest friends one could ask for but, sadly, most are a great distance away. The miracle of iPhones and the internet have helped with that.

The pandemic has brought innumerable obstacles and immense sadness, pain, distress and heartache to us all, in one form or another. For us, it has meant that the last remaining months and days of my mother’s life must be limited to home. Yet serendipitously, I have been given even more precious moments at home with her. The days of shopping together, visiting nearby museums, going on short camping trips or talking for long hours at a lovely luncheon spot have all ceased. Instead, the tiny joys of taking an afternoon walk, watching a great movie together or enjoying the sunshine and warmth on our faces have taken on greater significance.

I marvel at my mother’s internal strength, her spirit and her deep love of life. I sit in despair sometimes as I watch her try to catch her breath, see her moving much more slowly, and recognize the distant look in her eyes; I wonder where she has drifted off to at times.

We talk often. She shares her innermost fears, regrets (blessedly, very few), and final wishes with me. These are sometimes painful talks, but they are necessary, cathartic, and I let her choose her timing.

I find myself walking with great trepidation down the long hallway to my mother’s bedroom in the morning when I haven’t heard her stir yet. Will I at some point just find her gone, peacefully? Will she have to suffer greatly (I fervently pray that she doesn’t), as my dear father — her husband — did from cancer so many years ago? Will I be able to let her know how very, very much she has meant to me, how much she is so dearly loved by us all? Can I properly express that without her, I never would have become the counselor, teacher, mentor and social justice advocate that I am? My family and I have been blessed by her comfort, wisdom and beautiful spirit for close to 96 years now. Letting go by inches is so incredibly difficult …

A shared reality

So many of my dear counselor colleagues, friends and students have lost loved ones due to COVID-19 over the past two years. We have shared this reality as human beings, and together we mourn each loss. I have been honest about my mother’s condition with all of them so that they realize that even counselor educators deal with grief and loss. I teach all my students about the vital importance of knowing your limitations, knowing when to reach out for support, knowing when to step back and take a break, knowing when you are not at the “top of your game,” and knowing that it is OK for us to be fully human.

Perhaps putting my thoughts into words here is just my way of doing so. I hope that for those who have endured or are enduring similar circumstances, my words can offer some support, connection and solace. It is our humanity and spirit as counselors that binds us.

So too, as counselors, each of us has helped dozens, if not hundreds, of people cope and work through their grief and loss. It is part of our very nature. It is what we do, and we are honored to do so. We have learned our craft well and know what to say, how to say it and how to sit with another human being during their profound sense of pain and despair. We must make that kindness and compassion that we so freely give to others available for ourselves as well.

My mother is dying with grace; I am learning from her strength to honor her journey thusly. I will grieve horrifically when she passes. She has asked me not to grieve so, but that would be impossible. What a gift she has been to my entire family, that she even worries about how we will feel once she is gone! The price we pay for loving someone so fully, so unconditionally and so openly is to grieve their passing with our whole heart, soul and being. To have been eternally blessed with her love, I would not have it any other way.

Leon Seibert/Unsplash.com

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Suzanne Whitehead is an associate professor and the program coordinator of the counselor education program at California State University, Stanislaus. She is a licensed mental health counselor, a retired school counselor and a licensed addiction counselor. Contact her at swhitehead1@csustan.edu.

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Opinions expressed and statements made in articles appearing on CT Online should not be assumed to represent the opinions of the editors or policies of the American Counseling Association.

Grappling with compassion fatigue

By Lindsey Phillips August 31, 2020

Compassion fatigue presents a paradox for counselors and others in the helping professions. As Alyson Carr, a licensed mental health counselor and supervisor in Florida, points out, it compromises their ability to do the very thing that motivated many of them to enter the field in the first place — empathically support those in pain.

Empathy and compassion are attributes those in the helping professions are particularly proud to possess and cultivate. Yet those same characteristics may leave some professionals more susceptible to becoming traumatized themselves as they regularly observe and work with those who are suffering.

Jennifer Blough provides counseling services to other helping professionals as owner of the private practice Deepwater Counseling in Ypsilanti, Michigan. She says many of her clients experience compassion fatigue. One of her former clients, an emergency room nurse, witnessed trauma daily. One day, the nurse treated a child who had suffered horrendous physical abuse, and the child died shortly after arriving at the hospital.

This incident haunted the nurse. She had nightmares and intrusive thoughts about the child’s death and abuse. She started to isolate to the point that she had to step away from her job because she refused to leave her house. She couldn’t even bring herself to call Blough. She just sent a text asking for help instead.

Blough, a licensed professional counselor (LPC) and certified compassion fatigue therapist, asked the nurse to come to her office, but the nurse said she was comfortable leaving her home only when accompanied by her dog. So, Blough told her to bring her dog with her to the session. That got the nurse in the door.

From there, Blough and the nurse worked together to help the client process her trauma. Blough also taught the client to recognize the warning signs of compassion fatigue so that she could use resiliency, grounding skills, relaxation, boundary setting, gratitude and self-compassion to help keep her empathy from becoming unmanageable again.

Defining compassion fatigue

“One of the most important ways to help clients who might be struggling with compassion or empathy fatigue is to provide psychoeducation,” Blough says. “A lot of people don’t even realize there’s a name for what they’re going through or that others are going through the same thing.”

Blough, author of To Save a Starfish: A Compassion-Fatigue Workbook for the Animal-Welfare Warrior, didn’t understand that she was experiencing compassion fatigue when she worked at an animal shelter and as an animal control officer before becoming a counselor. After she started feeling depressed, she decided that she was weak and unfit for her job and ultimately left the field entirely. It wasn’t until she was in graduate school for counseling that she learned there was a name for what she had experienced — compassion fatigue.

According to the American Institute of Stress, compassion fatigue is “the emotional residue or strain of exposure to working with those suffering from consequences of traumatic events.” This differs from burnout, which is a “cumulative process marked by emotional exhaustion and withdrawal associated with workload and institutional stress, not trauma-related.”

Although compassion fatigue is the more well-known and widely used term, there is some debate about whether it is the most accurate one. Some mental health professionals argue that people can never be too compassionate. Instead, they say, what people experience is empathy fatigue.

In an interview with CT Online in 2013, Mark Stebnicki described empathy fatigue as resulting from “a state of psychological, emotional, mental, physical, spiritual and occupational exhaustion that occurs as the counselors’ own wounds are continually revisited by their clients’ life stories of chronic illness, disability, trauma, grief and loss.”

April McAnally, an LPC in private practice in Austin, Texas, is among those who believe that people can’t have too much compassion. Compassion involves having empathy and feeling what the other person does, but we have a screen — an internal boundary — that protects us, McAnally says. “Empathy, however, can be boundaryless,” she continues. “We can find ourselves overwhelmed with what the other person is experiencing. … So, what we actually become fatigued by is empathy without the internal boundary that is present with compassion.”

As Blough puts it, “Empathy is the ability to identify with, or experience, another’s emotions, whereas compassion is the desire to help alleviate suffering. In other words, compassion is empathy in action.”

McAnally, a certified compassion fatigue professional, also suggests using the term secondary trauma. She finds that it more accurately describes the emotional stress and nervous system dysregulation that her clients experience when they are indirectly exposed to the trauma and suffering of another person or animal.

Symptoms and risk factors

Anyone can be susceptible to burnout, but compassion fatigue most often affects caregivers and those working in the helping professions, such as counselors, nurses, social workers, veterinarians, teachers and clergy.

Working in a job with a high frequency of trauma exposure may increase the likelihood of developing compassion fatigue, McAnally adds. For example, a nurse working in an OBGYN office may have a lower risk of developing compassion fatigue than would an emergency room nurse. Even though they both share the same job title, the impact and frequency of trauma is going to be higher in the ER, McAnally explains.

Counselors should also consider race/ethnicity and contextual factors when assessing for compassion fatigue. Racial injustices that members of marginalized populations regularly experience are sources of pervasive and ongoing trauma, McAnally notes. And unresolved trauma increases the likelihood of someone experiencing empathy fatigue, she adds.

Carr, an American Counseling Association member who specializes in complex trauma and anxiety, and Blough both believe the collective trauma resulting from the COVID-19 pandemic and exposure to repeated acts of racial violence and injustice could lead to collective compassion fatigue for all helping professionals (if it hasn’t already).

McAnally, a member of the Texas Counseling Association, a branch of ACA, says the current sociopolitical climate has also affected the types of clients she is seeing, with more individuals who identify as activists and concerned citizens seeking counseling of late. She has found that these clients are experiencing the same compassion fatigue symptoms that those in the helping professions do.

Blough and Victoria Camacho, an LPC and owner of Mind Menders Counseling in Lake Hopatcong, New Jersey, say symptoms of compassion fatigue can include the following:

Feelings of sadness or depression
Anxiety
Sleep problems
Changes in appetite
Anger or irritability
Nightmares or intrusive thoughts
Feelings of being isolated
Problems at work
A compulsion to work hard and long hours
Relationship conflicts
Difficulty separating work from personal life
Reactivity and hypervigilance
Increased negative arousal
Lower frustration tolerance
Decreased feelings of confidence
A diminished sense of purpose or enjoyment
Lack of motivation
Issues with time management
Unhealthy coping skills such as substance use
Suicidal thoughts

There are also individual risk factors. According to Camacho, a certified compassion fatigue professional, individuals with large caseloads, those with limited or no support networks, those with personal histories of trauma or loss, and those working in unsupportive environments are at higher risk of developing compassion fatigue.

In fact, research shows a correlation between a lack of training and the likelihood of developing compassion fatigue. So, someone at the beginning of their career who feels overwhelmed by their job and lacks adequate training and support could be at higher risk for experiencing compassion fatigue, McAnally says.

One assessment tool that both Blough and Camacho use with clients is the Professional Quality of Life Scale, a free tool that measures the negative and positive effects of helping others who experience suffering and trauma. Blough says this assessment helps her better understand her clients’ levels of trauma exposure, burnout, compassion fatigue and job satisfaction.

Regulating the body and mind

“Having an awareness of our emotions and experiences, especially in a mindful way, can serve as a barometer to help protect us against developing full-blown compassion fatigue,” says Blough, a member of ACA and Counselors for Social Justice, a division of ACA.

Part of this awareness includes being mindful of one’s nervous system and the physical changes occurring within one’s body. When someone experiences compassion fatigue, their amygdala, the part of the brain involved in the fight-or-flight response, gets tripped a little too quickly, McAnally explains. So, their body may react as if they are in physical danger (e.g., heart racing, sweating, feeling panicky) even though they aren’t.

If clients get dysregulated, McAnally advises them to use grounding techniques to remind themselves that they are safe. She will often ask clients to look all over the room, including turning around in their chairs, so they can realize there is nothing to fear at that moment. She also uses the 5-4-3-2-1 technique, in which clients use their senses to notice things around them — five things they see, four things they hear, three things they feel, two things they taste and one thing they smell.

Research has shown that practicing mindfulness for even a few minutes a day can increase the size of the prefrontal cortex — the part of the brain responsible for emotional regulation, McAnally adds.

Blough often uses the square breathing technique to ground clients and get them to slow down. She will ask clients to breathe deeply while simultaneously adding a visual component of making a square with their eyes. They breathe in for four seconds while their eyes scan left to right. They hold their breath for four seconds while their eyes scan up to down. They breathe out for four seconds while their eyes scan right to left. And they hold their breath for four seconds while their eyes move down to up.

Counselors can also teach clients to do a full body scan to regulate themselves, Blough and Camacho suggest. This technique involves feeling for tension throughout the body while visualizing moving from the head down to the feet. If the person notices tension in any area, then they stop and slowly release it.

Camacho once had a client lean forward and grab the armrest of the chair they were sitting in while talking. She stopped the client and asked, “Do you notice you are gripping the armrest? Why do you think you are doing that?”

The client responded, “I wasn’t aware of it, but I find it comfortable. I feel like I’m grounding myself.”

Camacho, an ACA member who specializes in posttraumatic stress disorder, trauma, and compassion fatigue in professionals who serve others, used this as a teachable moment to show the client how to ground themselves while also having relaxed muscles. She asked the client to release their grip on the chair and instead to lightly run their fingers across it and focus on its texture.

Carr finds dancing to be another useful intervention. “Engaging in dancing and moving communicates to our brains that we are not in danger. [It] allows us to develop and strengthen affect regulation skills as well as have a nonverbal, integrated body-mind experience,” she explains.

Creating emotional boundaries

Setting boundaries can be another challenge for helping professionals. Blough says many of her clients report feeling guilty if they say “no” to a request. They often feel they have to take on one more client or take in one more animal. But she asks them, at whose expense?

Blough reminds clients that saying “no” or setting a boundary just means saying “yes” to another possibility. For example, if a client wants to schedule an appointment on Thursday night at the same time that the therapist’s child has a soccer game, then telling the client “no” just means that the therapist is saying “yes” to their family and to their own mental health.

Blough and McAnally recommend that people create routines to help themselves separate work from home. For example, clients and counselors alike could listen to an audiobook or podcast during their commute home, or they could meditate, take a walk or even take a shower to signify the end of the workday, Blough suggests. “Anything that helps them clear their head and allows them to be fully present for themselves or their families,” she adds.

People can also establish what Carr calls an “off switch” to help them realize that work is over. That action might involve simply shutting the office door, washing one’s hands or doing a stretch. At the end of the workday, Carr likes to put her computer in a different room or in a drawer so that it is out of sight and mind. Then, she takes 10 deep breaths and leaves work in that space.

Exercising self-compassion

“Because a lot of helping professionals are highly driven and dedicated, they tend to have unrealistic expectations and demand a lot from themselves, even to the point of depletion,” Blough says. “Having low levels of self-compassion can lead to compassion fatigue, particularly symptoms associated with depression, anxiety and posttraumatic stress disorder.”

In other words, self-compassion is integral to helping people manage compassion fatigue. “Self-criticism keeps our systems in a state of arousal that prevents our brains from optimal functioning,” Carr notes, “whereas self-compassion allows us to be in a state of loving, connected presence. Therefore, it is considered to be one of the most effective coping mechanisms. It can provide us with the emotional resources we need to care for others, help us maintain an optimal state of mind, and enhance immune function.”

According to Kristin Neff, an expert on self-compassion, caregivers should generate enough compassion for themselves and the person they are helping that they can remain in the presence of suffering without being overwhelmed. In fact, she claims that caregivers often need to focus the bulk of their attention on giving themselves compassion so that they will have enough emotional stability to be there for others.

People in the helping professions can become so focused on caring for others that they forget to give themselves compassion and neglect to engage in their own self-care. Blough often asks clients to tell her about activities that they enjoy — ones that take their mind off work, help them relax and allow them to feel a sense of accomplishment. Then she asks how often they engage in those activities. Clients often tell her, “I used to do it all the time before I became a professional caregiver.”

She reminds them that they can help others only if they are also taking care of themselves. That means they need to take time to engage in activities that relax and recharge them; it isn’t a choice they should feel guilty making.

Self-regulating in session

As helpers, counselors are likely to experience symptoms of compassion fatigue at some point. This is especially true for clinicians who frequently see clients who are dealing with trauma, loss and grief.

For McAnally, that experience came early in her career. During practicum, she had a client with a complex trauma history who couldn’t sleep at night. In turn, McAnally found herself waking up in the middle of the night, worrying about the client. She knew this was a warning sign, so she reached out to her supervisor, who helped her develop a plan to mitigate the risk of compassion fatigue.

It almost goes without saying that counselors should take the advice they give to their own clients: They should establish a self-care routine. They should seek their own counseling and support. They should set boundaries and find ways to recharge outside of work. And they should exercise self-compassion.

But counselors also need to find ways to self-regulate during sessions. “If you are tense and you’re hearing all of these heavy stories, you’re at a much greater risk of being vicariously traumatized,” Blough says. Self-regulation can provide a level of protection from that occurring, she notes.

Blough often uses the body scan technique while she is in session. Doing this, she can quietly relax her body without it drawing the attention of her clients. In addition, as she teaches relaxation skills to her clients, she does the skills with them. For example, she slows her own breathing while teaching clients guided breath work. That way, she is relaxing along with them.

Likewise, McAnally has learned to be self-aware and regulate her nervous system when she is in session. If she notices her heart rate accelerating and her stomach clinching when a client is describing a painful or traumatic event, then she grounds herself. She orients herself by wiggling her toes and noticing what it feels like for her feet to be touching the ground. She also looks around the room to remind her brain that she is safe.

McAnally also uses internal self-talk. She will think, “I’m OK right now.” As with the body scan, this is a subtle action that clinicians can take to ground themselves without the client even being aware that they are doing it.

Helping the helpers during COVID-19

Recently, Carr received a text from a counseling mentor who has been practicing for 40 years that said, “I am falling apart. I am lost. I don’t know what to do, but sending a text to someone I trust felt right. Write or call when you can.”

Carr quickly reached out, and her colleague said he was experiencing a sense of hopelessness that he hadn’t in many years. He worried about his clients and feared he wasn’t doing everything he could for them. He was also anxious about finances; several of his clients had become unemployed because of the COVID-19 pandemic, so he started seeing them pro bono. All of this was taking a toll on him personally and professionally.

Before the pandemic, McAnally managed her compassion fatigue symptoms in part by checking in with other therapists who worked down the hall from her office and by participating in in-person consultation groups. Now that she is working from home full time because of the pandemic, she says that she has to be more intentional about practicing self-care and accessing support. She calls her colleagues to check in, practices mindfulness, and schedules breaks to go outside and play with her dog.

Even when counselors recognize that they need help, they can encounter barriers similar to those their clients face. For instance, they may not be able to find in-network providers, and only a small portion of the hourly rate may be covered by their insurance. This problem made Carr pose some questions: “Who is helping the helpers right now? How can we take care of others if we aren’t able to more easily take care of ourselves?”

Then she decided to take action. She created Counseling for Counselors, a nonprofit organization dedicated to raising awareness about the emotional and psychological impact on mental health providers during a time of collective trauma. The organization’s aim is to generate funding that would allow self-employed licensed mental health professionals in need of treatment to more easily access those services.

“Although the heightened state of anxiety around the pandemic may have exposed this critical need, the demand for quality, affordable mental health care for counselors is ongoing,” Carr says. “Counselors are not immune to trauma and, now more than ever, licensed mental health professionals need access to mental health services in order to effectively treat the populations we serve and to continue to play an instrumental part in contributing to the well-being of society at large.”

Fostering compassion satisfaction

People in the helping professions often feel guilty or ashamed about struggling with compassion fatigue. They sometimes believe they should be immune or should be able to find a way to push through despite their symptoms. But that isn’t the case.

“I think the biggest takeaway when it comes to compassion fatigue is that it’s a normal, almost inevitable consequence of caring for and helping others. It’s not a character flaw or a sign of weakness. It’s not a mental illness. It affects the best and brightest and those who care the most,” Blough says.

For that matter, compassion fatigue isn’t something you “have” or “don’t have,” she adds. Instead, it operates on a spectrum, which is why it is so important for helping professionals to be aware of its warning signs and symptoms.

Blough acknowledges that compassion fatigue is always present in some form for her personally. She often manages it well, so it just simmers in the background. But sometimes it boils over. When that happens, she knows to regulate herself, to increase her self-care and to get support.

It is easy for a negative experience to overshadow a helping professional’s entire day and push aside any positive aspects. That’s why Blough and McAnally both recommend setting aside time daily to list three positive things that happened at work. A counselor or other helping professional could focus on the joy they felt when they witnessed an improvement in their client that day or when they witnessed the “aha!” moment on their client’s face.

Blough often advises clients to journal or otherwise reflect on these positive experiences before they go to bed because it can help prevent rumination and intrusive thoughts that may disrupt sleep. Celebrating these “little victories” will help renew their passion for their job, she adds.

As Blough points out, “Empathy can definitely lead to compassion fatigue, but if properly managed, it can also foster compassion satisfaction, which is the antithesis of compassion fatigue. It’s the joy you get from your work.”

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Lindsey Phillips is a contributing writer to Counseling Today and a UX content strategist. Contact her at hello@lindseynphillips.com or through her website at lindseynphillips.com.

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Opinions expressed and statements made in articles appearing on CT Online should not be assumed to represent the opinions of the editors or policies of the American Counseling Association.

Dealing with the realities of dementia

By Bethany Bray December 23, 2019

Licensed professional counselor (LPC) Ruth Drew oversees the Alzheimer’s Association’s 24-hour helpline, which offers support to those facing the challenges of dementia and Alzheimer’s disease, including families and caregivers. The fact that the helpline receives more than 300,000 calls each year hints at the heart-wrenching issues that accompany a dementia diagnosis, not just for the individual but for the person’s entire support system.

“We receive a wide range of questions, from someone worried about the warning signs of cognitive decline or dealing with a new diagnosis, to an adult son whose mother didn’t recognize him for the first time, or a wife wondering how to get her husband with Alzheimer’s to take a bath. Whatever the reason for the call, we meet callers where they are and endeavor to provide the information, resources and emotional support they need,” says Drew, director of information and support services at the Chicago-based nonprofit.

Professional counselors are a good fit to help not only individuals with dementia and Alzheimer’s, but also those in their care networks, Drew says. Whether counseling individuals, couples or even children, the far-reaching implications of dementia mean that practitioners of any specialization may hear clients talk about the stressors and overwhelming emotions that can accompany the diagnosis.

“People diagnosed with Alzheimer’s and other dementia diseases are going through profound life changes — coping with the realities of an incurable disease that is stealing their abilities and their memories. Counseling offers a place to process the losses, develop ways to cope, and find meaning in their current situation,” Drew says. “Similarly, family members face emotional, physical and financial challenges when they care for someone with Alzheimer’s. It helps to have a safe place to process feelings, get support, learn to cope with present realities, and plan for the future.”

A growing need

“Dementia isn’t a normal part of aging. It just happens that most dementia patients are older,” says Jenny Heuer, an LPC and certified dementia practitioner in Georgia who specializes in gerontology. “There is this stigma that just because you’re getting older, you’re going to get dementia.”

The Alzheimer’s Association (alz.org) defines dementia as “an overall term for diseases and conditions characterized by a decline in memory, language, problem-solving and other thinking skills that affect a person’s ability to perform everyday activities.”

Although many people associate dementia with Alzheimer’s, there are numerous forms of dementia, and not all are progressive. Dementia can be reversible or irreversible, depending on the type, explains Heuer, the primary therapist in the geriatric unit at Chatuge Regional Hospital in Hiawassee, Georgia. Alzheimer’s, an irreversible, progressive form of dementia, is most common, followed by vascular dementia, which can occur after a stroke. Forms of dementia can also co-occur with Down syndrome, Parkinson’s disease, Huntington’s disease and other diagnoses. Research has also linked moderate to severe traumatic brain injury to a higher risk of developing dementia or Alzheimer’s disease years later.

Heuer, a member of the American Counseling Association, recalls a client she counseled who was diagnosed with Alzheimer’s prior to age 62. She had lived with a husband who was violent and physically abusive toward her, and the client’s caregivers wondered if she had suffered a brain injury that contributed to her early onset Alzheimer’s.

Heuer notes that other conditions can lead to an assumption or misdiagnosis of dementia. For example, a urinary tract infection (UTI), if left untreated, can progress far enough to cause confusion in a client. Once the UTI is diagnosed and treated, the confusion can dissipate. In addition, excessive alcohol use, depression, medication side effects, thyroid problems, and vitamin deficiencies can cause memory loss and confusion that could be mistaken for dementia, according to the Alzheimer’s Association.

“There’s so many [other] things to rule out,” Heuer says. “Doctors try to rule out every other health issue before they diagnose dementia.”

The complicated nature of dementia only reinforces the need for counselors to do thorough intake evaluations and to get to know clients holistically, Heuer says. Counselors should ask clients about anything that has affected or could be affecting their brain or memory, including medication use, stress levels, past physical trauma or brain injury, depression, sleep patterns, exercise and other factors.

The World Health Organization (WHO) reports that roughly 50 million people worldwide currently have dementia, and nearly 10 million new cases develop each year. Alzheimer’s disease-related dementia may contribute anywhere from 60% to 70% of that overall number, according to WHO.

Alzheimer’s is the sixth-leading cause of death in the United States, according to the Centers for Disease Control and Prevention. The Alzheimer’s Association estimates that 14% of people ages 71 and older in the United States have some form of dementia. A recent report from the nonprofit estimated that 5.7 million Americans of all ages were living with Alzheimer’s-related dementia in 2018, the vast majority of whom (5.5 million) were 65 and older. Close to two-thirds of Americans with Alzheimer’s disease are women, according to the association.

These numbers are only expected to increase as the U.S. population ages and the baby-boom generation reaches retirement and later life, Heuer notes.

The U.S. Census Bureau projects that in the year 2034, the number of Americans 65 and older will, for the first time in history, eclipse the nation’s number of youths under age 18. By 2060, close to one-quarter of Americans will be 65 or older, and the number of people older than 85 will have tripled.

“Aging issues hit home for counselors across the board,” Heuer says, “because we are all aging, and many are caring for aging parents. … I invite other counselors to join me in working with this population. [Alzheimer’s] is the sixth-leading cause of death. That sounds very morbid, but it’s only going to go higher. More and more people will be diagnosed. With the aging baby-boom population, there’s someone around every corner [who is] going to be impacted by this disease.”

Caring for the caregivers

There is an obvious emotional component to caring for a loved one affected by memory loss and the other aspects of dementia, but there is also the burden of assuming management of the person’s practical tasks, such as financial planning and keeping up with medical appointments. The stress of it all can affect the person’s entire network, says Phillip Rumrill, a certified rehabilitation counselor in Ohio whose professional area of expertise is clients with disability, including dementia.

“Dementia affects the whole family system, and possibly for generations. The person [with dementia] needs help, yes, but [so do] their spouse, children and entire family system. That’s critically important [for counselors to be aware of] when you’re dealing with dementia,” says Rumrill, a member of the American Rehabilitation Counseling Association, a division of ACA. “There is a tremendous amount of burnout that comes with being a dementia caregiver.”

Witnessing a loved one’s memory and abilities decline can cause caregivers to feel sad, frustrated, exhausted, overwhelmed, hurt, afraid and even angry, says Matt Gildehaus, an LPC who owns Life Delta Counseling, a private practice in Washington, Missouri.

“The caregivers and loved ones are often the hidden victims of dementia. They can become completely overwhelmed as the role becomes all-encompassing,” says Gildehaus, who counsels adults facing a range of challenges, including aging-related issues and dementia. “Taking care
of someone can easily become an identity that gets affirmed and reinforced until it comes at nearly the complete expense of self-care. When being the caregiver for someone with dementia overtakes their life, the caregiver’s emotional and physical health frequently begin to decline.”

Each of the counselors interviewed for this article asserted that clinicians should, first and foremost, emphasize the importance of self-care with clients who are caregivers to individuals with dementia. Counselor clinicians can ask these clients what they are doing for self-care, help them establish a self-care plan if needed, and connect them with local resources such as support groups and eldercare organizations.

It is also important to encourage clients to ask for help from others when they are becoming overwhelmed, says Rumrill, a professor and coordinator of the rehabilitation counseling program at Kent State University in Ohio, as well as founding director of its Center for Disability Studies. If clients mention having a loved one with dementia, counselors should listen carefully to make sure these clients are taking care of themselves and processing their feelings related to the experience.

Connecting clients to support groups and other resources can be vital because many families feel lost and isolated after their loved one receives a dementia or Alzheimer’s diagnosis, Drew notes. “This isolation can increase throughout the journey as caregiving demands intensify, especially if they don’t know where to turn for help,” she says.

Families may also experience emotions that parallel the grieving process as they witness the progressive loss of the person they knew. Caregivers might even find themselves with hard feelings emerging toward their loved one, particularly as they try to handle the frustrating behavior challenges that Alzheimer’s and dementia can introduce.

“The disease can be very deceiving because one day the person may be very clear, and another day they’ll be confused. Caregivers can feel [the person is] doing things on purpose, just to push their buttons,” Heuer says. “I often ask if the person was aggressive or called [the client] names before they were diagnosed. Most often, the answer is no. Then I explain that it’s the disease, not the individual” prompting the behavior.

Gildehaus, a member of ACA, has seen similar frustrations among clients in his caseload. “I often help caregiver clients by providing a safe place for them to share the things they don’t feel they can share with family and friends,” he says. “For caregivers, there are three tools I focus on using: therapeutic silence, empathic listening, and normalizing what they often describe as ‘terrible thoughts.’ These … can be ideas like, ‘They make me so angry,’ ‘I dread going to the nursing home some days’ or even ‘Sometimes I secretly hope they don’t live for years like this.’”

Rumrill notes that clients caring for a loved one with dementia may need a counselor’s help to process how the disease has disrupted roles within the family. He experienced this personally when caring for his grandmother, who lived with dementia for years before passing away in 2009 of stomach and liver cancers. Rumrill, who held power of attorney for his grandmother’s financial affairs, had to adjust to taking care of someone who had taken care of him throughout his life. It felt like a role conflict to have to begin making decisions on his grandmother’s behalf while still trying to respect her wishes, he recalls.

“It’s changing roles: They used to take care of you, and now you take care of them,” Rumrill says. “There is an odd juxtaposition when a child is telling a parent what to do. It can be hard [for the older adult] to accept when it’s coming from the younger generation. The roles have switched, and no one got the memo.”

Counseling sessions for couples and families can also serve as safe spaces to talk through the stressors and disagreements that come with caregiving, Rumrill and Heuer note. Counselors can serve as neutral moderators to facilitate conversations about tough subjects that clients may be fearful of or avoiding outside of sessions. This can include talking over logistical or financial issues, such as dividing caregiving tasks or assigning power of attorney, and harder conversations such as when and how to move a loved one to a care facility.

Counselors who work with couples should be aware of the intense stress that providing care for someone with dementia can put on relationships, Rumrill adds. Home life can be turned upside down when one member of a couple’s time and attention are devoted to caregiving. This is especially true if the family member with dementia moves into the home. Tasks that used to flow easily, such as unloading the dishwasher or taking the kids to sports practices, can become points of contention. Challenges that the couple successfully navigated before — from budgeting to parenting issues — can become more pronounced and complicated as caregiving puts extra strain on the couple’s time, emotions and finances, Rumrill says.

It’s an unfortunate reality, but counselors working with clients who have dementia or their families also need to be watchful for signs of elder abuse, including financial abuse, Rumrill says. Dementia patients and their caregivers are also at higher risk for issues such as depression, anxiety, suicidal ideation, and substance use and abuse (which may be used as a coping mechanism).

Listen and validate

Clients who have dementia can get a variety of needs addressed in counseling sessions — needs that will change as the dementia progresses.

In the early stages of dementia, counselors can help clients process their feelings and fears about the diagnosis, as well as work toward accepting and adapting to the changes that are coming. In the middle to latter stages, clients may benefit more from reassurance and validation from a counselor, as well as occasional redirection and calming techniques.

Heuer recalls a client whose husband had recently been placed in a memory care facility because of Alzheimer’s disease. The client — whom Heuer calls “Anne” for the purposes of this example — was dealing with pre-existing depression, which was the initial focus of the counseling sessions. Heuer and Anne also discussed Anne’s relationships with family members and the various changes she was facing, which included moving because of her husband’s placement in the memory care facility.

According to Heuer, Anne harbored a great fear of losing her own memory, and over time, her memory did in fact begin to deteriorate. She would acknowledge the decline in counseling sessions as she and Heuer talked about its impact on Anne’s life. Later, as Anne’s dementia progressed, Heuer shifted her work to focus more on fostering Anne’s feelings of safety and connection. “The interesting part of working with Anne is she never mentioned the word dementia. I heard about her diagnosis from family and caregivers,” Heuer recalls.

“As her memory declined, I would reflect her feelings [in counseling],” Heuer says. “Then there were sessions where Anne would spend the majority of the time talking about how she had been traveling on a train and had just gotten off the train. Frequently, she would share the story as if it was the first time she was telling it to me.” Heuer says one of the best suggestions she has been given for working with clients with dementia is to show them the same level of patience and attention regardless of whether they are telling her a story or sharing a memory with her for the first time or the 10th time.

“Anne also had hallucinations [in the latter stages of dementia],” Heuer says. “She had moments of clarity where she knew they were hallucinations and questioned her own sanity. I had no magical cure or answer. I would try and imagine how I would feel if this were happening to me and [then] tapped into empathy and the core foundation of person-centered therapy.”

Most of all, individuals with dementia need a counselor to simply “be present and listen,” adds John Michalka, an LPC with a solo private practice in Chesterfield, Missouri. He specializes in working with clients who have mood disorders related to chronic illness, including dementia.

“Patients living with dementia often tell me they just need their loved ones to stop nagging them and making them feel like the things they are doing are intentional,” says Michalka, an ACA member who has personal experience caring for a loved one with dementia. “The patient isn’t forgetting on purpose. The patient has enough to deal with without being made to feel like a burden as well. It always amazes me how simple and unselfish the patient’s request is when it comes to what they need: just simple love, understanding and patience.”

The following insights may be helpful for counselors who treat clients with dementia. Some of the guidance may also be relevant to share with clients who are family members of or caregivers to a person with dementia.

>> Correcting versus agreeing: Patients in the memory care unit where Heuer works sometimes come up to her and say, “It’s so good to see you again!” even though they have never met her before. Over time, she has learned to read clients and think on her feet to respond appropriately to remarks that aren’t based in reality.

For caregivers, deciding whether to correct a person with dementia or go along with what the person is saying can become a daily or even moment-to-moment struggle. Heuer says her decision to validate or correct is often based on how likely the person is to become agitated or aggressive. But empathy also comes into play. “I try to put myself in their shoes. How would I feel if I were seeing a friend I hadn’t seen in a while? It really comes down to meeting them in their emotions.”

Some clinicians may call the practice of validating or going along with a client with dementia “therapeutic lying,” Heuer says, but “I call it ‘molding the information’ and doing what it takes for them to feel calm and safe. …We have to adapt to them because they are not able to adapt to us. It is as if they have a different inner world, and we have to meet them in their world.”

Michalka says he also finds validation therapy helpful for easing anxiety in clients. With clients who are dementia caregivers, he often emphasizes that what is going on in the mind of the person with dementia is their reality.

He recalls one client who was beginning to panic because they saw someone in their room. “There was no one in the room, but the patient’s experience or perception of a stranger in their room was real,” Michalka says. “A natural reaction for most caregivers would be to correct the patient. In doing so, we are challenging the patient’s perception of reality. This typically will only escalate the patient’s anxiety and, in doing so, escalate the loved one’s or caregiver’s anxiety.

“Imagine if you saw a stranger in your room, and when you [try] to tell someone, they proceed to tell you, ‘No, there [isn’t].’ Would you not become more and more agitated as you try to convince them [and] they continue to challenge your reality? Instead, we should validate their experience by asking if that stranger is still in the room. Then, one would empathize with the patient by validating how scary that must have been, but now the stranger is no longer there and they are safe. After which, the patient’s attention should be redirected to a more pleasant thought or situation.”

>> Considering the whole person: Working with clients with dementia “takes you out of your comfort level because you have to become very creative in how you interact with [them]. It’s not the type of counseling that you learn in a textbook,” Heuer says. “Your ability to counsel and work with these individuals goes well beyond the knowledge you gain about counseling in your master’s [program].”

Heuer encourages clinicians to learn more about who clients were before their dementia diagnosis — what they did for a career, what their hobbies were, their likes and dislikes. Counselors can ask clients directly for this personal information or seek details from their family members. Learning these personal details can help to better inform counselors’ interventions and help form stronger connections with clients, Heuer says. “Tapping into what made them happy as a human being [without dementia] may be therapeutic for them,” she adds.

For example, a client who loves baseball may be comforted and more responsive while watching a televised ballgame or flipping through an album of baseball cards with a counselor. A client who was a teacher or a banker might find comfort writing in a ledger. Even clients with late-stage dementia can respond when their favorite music is played, Heuer notes.

She recalls one client who had previously worked in business and would sometimes think that his caregiver was his secretary. When this happened, the caregiver would “take notes” for him by writing on paper. “It doesn’t have to make sense, but to them it may make sense,” says Heuer, whose doctoral dissertation was on the lived experiences of individuals with early stage Alzheimer’s disease.

>> Redirecting: When working with clients in the middle to latter stages of dementia, techniques that prompt a change of focus are invaluable. Redirection can keep these clients from becoming upset or escalating to aggression, Heuer says. For caregivers, this technique might involve engaging the person in an activity that they used to enjoy or simply asking for help with a task, such as folding laundry or setting the table.

“Redirection really comes into play when an individual is exhibiting behaviors such as agitation, fear, anger or paranoia,” Heuer explains. “Normally, there is something in their environment that is triggering them. An example we often observe and hear about is an individual [who] is wanting to go home. In essence, they want to feel safe and are looking for something familiar. Redirection is a technique that refocuses the individual’s attention in an effort to therapeutically calm them and make them feel safe.”

Heuer mentions a woman who was wandering in the care facility where Heuer works and feeling a strong urge to leave. The woman was getting agitated and escalating to the point that staff members were going to medicate her. Heuer stepped in and asked the woman if she wanted to take a walk. The woman agreed and soon calmed down as she and Heuer walked together and chatted.

With dementia, behaviors often manifest out of the person’s worry about their own safety or the safety of loved ones, Heuer notes.

“We all have that need to have a sense of purpose. Just because someone has dementia, they’re not less human. They have similar needs but have a different way of communicating them. Usually, there is a need behind every single behavior they’re displaying,” Heuer says.

>> Working through grief: Individuals with dementia and their loved ones often experience a range of grief-related emotions, from denial and avoidance to sadness. Counselors may find it helpful to use grief and loss techniques with these clients, Rumrill says.

Watching a loved one with dementia decline and seemingly change into a different person can feel similar to experiencing that person’s death or loss, Rumrill says. In the case of his grandmother, even her vocabulary and the way she spoke changed. She began using profanity and other words that Rumrill wasn’t previously aware she even knew. When she became angry, Rumrill says she would “go off” on people, which she never did prior to her dementia diagnosis.

“There’s a tremendous sense of loss that can go with that. The person you knew and loved isn’t there [any longer],” he says. “I was grieving the loss of who [his grandmother] was and also grieving with her over her loss of independence.”

Feelings of loss can also resurface for clients with dementia who are widows or widowers, even if they have previously processed their partner’s death. Dementia can reaggravate the person’s feelings of grief and sadness or even ignite feelings of anger toward a deceased partner for leaving them to go through their dementia journey alone, Rumrill says.

Family members and caregivers may experience repeated cycles of grief as their loved one’s dementia or Alzheimer’s progresses, Michalka adds. “Each time the loved one living with dementia progresses to the next stage, the client [a caregiver or family member] in some ways repeats the grieving process. They now are experiencing another loss. It is as if they have lost their loved one once again,” Michalka says. “It is extremely difficult for many clients to have mom or dad not know who they are or simply not remember their name. The client loses their loved one many times during the progression of dementia. At a minimum, the client loses the person their loved one once was, and then once again upon the passing of the loved one.”

>> Focusing on strengths: Clients with dementia are likely to be saddened by the anticipated or actual loss of their abilities. A counselor can help these clients flip their perspective to focus on what the person can still do, Heuer says. She often uses the words strengths and challenges, not weaknesses, during conversations about what the client is still able to do and enjoy.

For example, a client with dementia may no longer be able to maintain a garden outdoors, but gardening supplies and planter pots can be brought to the person inside so they can still get their hands in the soil. “Activities can change as the disease progresses,” Heuer notes.

>> Using “tell me about” prompts: Gildehaus says that narrative therapy can be a helpful technique with clients who have dementia. These clients often respond well to storytelling prompts, even as their memories fade. It can be therapeutic for clients with dementia to share memories and, in turn, to feel heard and understood, he explains.

Similarly, Heuer uses reminiscence therapy with clients with memory loss, asking individuals to talk about their careers, families, and other favorite memories. It is not helpful, however, to frame questions by asking clients whether they remember something, she stresses. Instead, counselors can use gentler “tell me about” prompts to spur clients to open up. For example, instead of asking, “Do you remember your parents?” a counselor would say, “Tell me about your parents,” Heuer explains.

Rumrill notes that group work can be very helpful for caregivers or family members of people with dementia, especially to prevent or ease burnout. Motivational interviewing, cognitive behavioral techniques, and rational emotive techniques can also help clients process the changes and stresses that come with having a loved one with dementia. But Rumrill urges counselors to use whatever techniques they find to be most helpful to and best suited for the client.

Dementia is “no more stressful than any other life issue that brings people to counseling; it’s just different,” Rumrill says. “It has unique features that need to be understood to help. Marshal all the coping reserves you can to help the client.”

>> Offering empathic listening: Gildehaus notes that professional counselors’ core skills of listening, empathic reflection and normalization can go a long way for clients dealing with dementia.

“In my experience, clients struggling with dementia need someone to listen to them for understanding without confronting them, trying to argue with them, or trying to fix them,” Gildehaus says. “Normalizing frustrations and fears related to memory challenges and aging also helps clients feel less defective.”

When working with clients who have dementia, Gildehaus says his primary objective is to offer a nonjudgmental environment in which these individuals can share their frustrations and fears. “My efforts are focused on providing an interaction where they feel heard and understood without feeling questioned or having someone trying to talk them out of their ideas,” he says.

This came into play this past summer as Gildehaus faced a tough conversation with a client who needed to give up her right to drive because of cognitive decline. “This was very hard for her,” he recalls. “She argued that she did not drive far, that she had not had any accidents, and that she didn’t care if she died in an accident. She became very emotional — tearful and angry. I listened empathically, validated her truths, and reflected her logic and feelings. Then, I asked if she wanted her lasting legacy to be causing someone else’s injury or death. She agreed this was not what she wanted. We then explored options and resources that would allow her to maintain her freedom and active schedule without driving. We talked about local taxi services, friends who were going to the same activities [and could give her a ride], and the obvious solution became allowing her home health care provider to drive her most of the time.”

Still human

Individuals with a dementia diagnosis often feel as if they’ve been labeled as damaged goods, “deemed incompetent and unable to do anything for themselves,” Heuer says. The empathy and support that professional counselors are capable of offering these clients can go a long way toward changing that mindset, she asserts.

People with dementia “are still capable, still human, and they have emotions,” Heuer emphasizes. “There is an immediate stigma attached to someone [with a dementia diagnosis] that they aren’t able to do anything for themselves, and that’s often a source of frustration. There is an assumption that they’re helpless. But they will say, ‘I need help.” … They will let you know. What they need from counselors — and everyone else — is the recognition that they are still a person and still human.”

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Counselors as caregivers

Despite a career as a helping professional, Phillip Rumrill found himself feeling “inadequate” when it came to caring for his grandmother as her dementia progressed. He admits that he learned how to manage “through trial and error.”

The professional objectivity that allows practitioners to help others process issues in counseling simply isn’t there when it comes to caring for their own loved ones, says Rumrill, a certified rehabilitation counselor and a professor and coordinator of the rehabilitation counseling program at Kent State University.

“All of this stuff that you know about professionally goes out the window when you experience it personally,” Rumrill says. “You may have helped a client who is dealing with this, but it’s not the same when you’re going through it yourself. … You may think that because you have expertise in helping others you might know procedurally what to do, but it’s just different when it’s affecting you on a core level. You can arm yourself with information, but it’s going to be very different to be going through it on your own.”

Although it may not come easily, counselors who have loved ones with dementia should heed the same guidance they would give to clients in the same situation, including keeping up with their self-care and asking for help when needed.

After his grandmother passed away in 2009, Rumrill collaborated with two colleagues, Kimberly Wickert and Danielle Dresden, who also had cared for loved ones with dementia, to write the book The Sandwich Generation’s Guide to Elder Care. Their hope was that their insights might help other practitioners who were facing similar challenges. “You can’t be [your] family’s counselor,” Rumrill says. “Sometimes you have to shut off your professional side and deal with the humanity of your own experience.”

John Michalka, a licensed professional counselor and private practitioner, says he and his wife experienced a range of issues — from stress to anxiety to grief — while caring for his mother-in-law. Michalka’s mother-in-law, who had vascular dementia, moved in with Michalka and his wife in 2013 when she was no longer able to care for herself.

“I took a hiatus from work, and for the last two years of her life, I cared for her until she passed [in January 2015],” he says. “I watched my wife, as a daughter, struggle with pain and grieving during every step down of the disease, from [her mother] forgetting our names to [us] becoming absolute strangers. For me, I was the caregiver and did my best to suppress the emotion. To say the least, caring for anyone living with dementia can be extremely difficult. At least it was for me.”

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The Alzheimer’s Association has a wealth of information on dementia and Alzheimer’s disease, including nuances of the diagnoses and resources for living with or caring for a person who has been diagnosed. Call the association’s 24/7 helpline at 800-272-3900 or visit alz.org (click the “Help & Support” tab for links to online and local support groups).

Also, the U.S. Administration on Aging offers an eldercare services search tool at eldercare.acl.gov. Resources are also available from the Dementia Action Alliance (daanow.org) and the Family Caregiver Alliance (caregiver.org).

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Contact the counselors interviewed for this article:

Matt Gildehaus: matt@lifedeltacounseling.com
Jenny Heuer: jenheu77@gmail.com
John Michalka: john.michalka@cvcstl.com
Phillip Rumrill: prumrill@kent.edu

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Read more

Check out an extended Q+A with licensed professional counselor Ruth Drew, the Alzheimer’s
Association’s director of information and support services, at CT Online: ct.counseling.org/2019/12/qa-helping-clients-affected-by-dementia/

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Additional resources

Take advantage of the following select resources offered by the American Counseling Association:

ACA Divisions

The Association for Adult Development and Aging (aadaweb.org)

Counseling Today (ct.counseling.org)

“How do you know it’s not counseling?” by Jenny Heuer
“The caregiving conundrum” by Tia Amdurer
“Facilitating support groups for caregivers” by Brooke B. Collison
“Multiple stressors take a bite out of the sandwich generation” by Lynne Shallcross
“Changing the conversation about aging” by Lindsey Phillips
“Have you gone gray?” by Matthew Fullen
“Understanding elder financial abuse” by Joanne Cohen
“Understanding the gap: Encouraging grad students to work with an aging population” by Neha Pandit

Books (counseling.org/publications/bookstore)

Counseling Older People: Opportunities and Challenges by Charlene M. Kampfe

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Bethany Bray is a senior writer and social media coordinator for Counseling Today. Contact her at bbray@counseling.org.

Letters to the editor: ct@counseling.org

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Opinions expressed and statements made in articles appearing on CT Online should not be assumed to represent the opinions of the editors or policies of the American Counseling Association.

Q+A: Helping clients affected by dementia

Compiled by Bethany Bray December 13, 2019

The Alzheimer’s Association estimates that 14% of people ages 71 and older in the United States have some form of dementia. Alzheimer’s disease, the cause of the most common form of dementia, is the sixth-leading cause of death in the United States.

Each dementia diagnosis will affect not only the individual but also his or her entire care network – emotionally, relationally, financially and in myriad other ways, says Ruth Drew, a licensed professional counselor and director of information and support services at the Alzheimer’s Association.

The most important message a counselor can give these clients – whether that be an individual with dementia or the family or caregivers of someone with dementia – is that they are not alone, says Drew, who oversees the Alzheimer’s Association’s 24-hour helpline.

Counseling Today sent Drew some questions via email to get her perspective.

[Note: Some responses have been edited slightly for purposes of length or clarity.]

What do you want counselors to know about some of the common fears, challenges and questions that come with dementia and how they can support clients through these challenges in counseling sessions?

Alzheimer’s disease is a progressive brain disease that worsens over time. Currently, there is no medication that can cure, prevent or slow down the disease — only medications that help with symptoms. Receiving an Alzheimer’s diagnosis is life-changing, and it impacts the entire family. Along with the diagnosis and disease journey comes a wide range of emotions — fear, resentment, despair, anger, denial, relief. As a result, many families often feel lost and isolated after the diagnosis. This isolation can increase throughout the journey as caregiving demands intensify — especially if they don’t know where to turn to for help.

We want everyone to know that no one should face this disease alone, and no one has to. There is so much information and support available round the clock, and it is only a phone call or mouse click away through the Alzheimer’s Association Helpline (800-272-3900) and website at alz.org.

Counselors can help people facing dementia by acknowledging that it is normal to experience a wide range of emotions. Getting information and support is an empowering first step in coping with the challenges ahead.

What kind of help does the Alzheimer’s Association Helpline offer?

Our free, 24/7 Helpline receives more than 300,000 calls a year, answered by specialists and master’s-level clinicians who provide disease information, caregiving strategies, local community programs and resources, crisis assistance and emotional support.

Ruth Drew, LPC, director of information and support services at the Alzheimer’s Association.

If a caller is worried about signs of memory loss, we provide information on the warning signs of the disease, how to approach the conversation with the person [showing signs of memory loss] and how to seek a diagnosis. If a person recently received a diagnosis, we can answer their questions and provide a safe place to process their feelings and learn about the peer support that is available. If a caregiver is exhausted, grieving and feeling burned out, we can listen, normalize their experience, and help them find the support and resources they need for themselves and the person they are caring for.

We advocate for a person-centered caregiving approach and help families figure out how to navigate Alzheimer’s based on their unique set of circumstances. That can include connecting people with local Alzheimer’s Association education programs, support groups and early stage engagement programs offered by our chapters across the country.

In addition to counseling, what resources do you recommend for people with dementia and their caregivers and families?

Alzheimer’s can go on for many years, so people need different resources and levels of support as the disease progresses. Whether you are the person living with the disease or [whether you are] a family member, the first step is to educate yourself about the disease, care strategies and available resources. The second step is to have open conversations with the people who are important in your life and make plans for the future.

Getting support from the people you care about and making plans for the future are empowering steps that can help families make the most of their time now and avoid a crisis later. The Alzheimer’s Association offers a number of education programs in local communities across the country that can help people understand what to expect so they can be prepared to meet the changes and challenges ahead and live well for as long as possible. We also provide free online education courses, from understanding the disease to planning for the future.

Whenever facing difficult times, having a good support network [they] can turn to for advice and encouragement can help individuals feel socially connected and give them a sense of belonging and purpose. Connecting with others going through the same situation — whether they are living with the disease or a caregiver — can help put their own experiences with the disease in perspective and provide them with the support and encouragement they need. The Alzheimer’s Association also offers local face-to-face support groups and an online support community.

What would you like to highlight for counselors to recommend for their clients? Is there anything that comes to mind that they might not be aware of?

One thing we always want people to be aware of is the Alzheimer’s Association free 24/7 Helpline (800-272-3900). It’s available 365 days a year, in over 200 languages, for anyone in need of information, advice and support — whether it is a person living with the disease, their caregivers, professionals, academia or the general public. Trained staff are ready to listen and equipped with information to provide referrals to local community programs and services, disease education, crisis assistance and emotional support.

Are there any assumptions or misconceptions that counselors might have about dementia and Alzheimer’s that you’d like to clear up?

Sometimes when people picture a person with Alzheimer’s, they envision a person in the late stage of the disease. Alzheimer’s often progresses very slowly, and people may live four, eight or even 20 years after the onset of symptoms. The range and variety of symptoms is enormous, and many people can stay very engaged with family and activities of living for a long time in a supportive environment.

Often, caregivers tell me that everyone asks about the person with the disease, but no one asks them how they are doing. The data show that caring for someone with Alzheimer’s is much more arduous physically and emotionally than other types of caregiving, so it is crucial to ensure the caregiver is well supported.

Family members often deal with grief and loss throughout the time they care for someone with the disease. They grieve each loss of ability and memory, as well as anticipating the losses to come. Symptoms of stress, depression and anxiety may be connected to this ongoing loss.

Our readers are professional counselors of all types and specialties (including graduate students). Are there any main takeaways you’d like to share?

People impacted by dementia need understanding, information and support. While each situation is unique, the more you know about the disease, the better able you will be to connect with each person and provide a therapeutic setting where they can get the help they need.

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The Alzheimer’s Association has a wealth of information on dementia and Alzheimer’s disease, including nuances of the diagnoses and resources for living with or caring for a person who has been diagnosed. Call the association’s 24/7 Helpline at 800-272-3900 or visit alz.org

See Counseling Today’s January cover article, “Dealing with the realities of dementia,” for an in-depth look at helping clients with dementia, as well as their families and caregivers.

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Follow Counseling Today on Twitter @ACA_CTonline and on Facebook at facebook.com/CounselingToday.

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Opinions expressed and statements made in articles appearing on CT Online should not be assumed to represent the opinions of the editors or policies of the American Counseling Association.