Tag Archives: dementia

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:

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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)

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.

 

How do you know it’s not counseling?

By Jenny Heuer October 28, 2019

It was my “aha!” moment as a counselor. My mentor had captured it in one question: “How do you know it’s not counseling?”

What I had been taught and what I had envisioned as counseling was the Carl Rogers, one-hour, chair-to-chair, face-to-face session, and that was definitely not happening. I was counseling an individual in the middle stage of dementia. I would sit and listen about how she was getting on and off a train and how she wanted to learn to knit again to make clothes for her grandbabies. My client had not been on a train. And as much as I wished for her hands to be OK, they weren’t capable of coordinating the task of knitting because of the impact of dementia.

So, I would just sit and listen — usually right next to her on the couch because she had hearing issues. Sometimes the sessions would not even last an hour. In fact, at times, they lasted only 30 minutes because I could tell she was getting tired. I felt bad and started to fear that ethically I was doing the wrong thing. How could I spend only 30 minutes with this client listening to her repeated story of getting on and off a train and knitting?

I began to wonder whether I was taking advantage of the situation. After all, I was getting paid to work with this client, but the process didn’t resemble what I thought counseling should look like. Eventually, I told the family I couldn’t ethically continue to work with the client because her dementia prevented her from processing. However, the son wanted me to continue spending time with his mother, even if it only involved activities such as drawing.

In my mind, this did not equate to “true” therapeutic process. So, I called my mentor, and that’s when she asked one simple question: “How do you know it’s not counseling?”

I felt the weight and pressure of my boxed-in idea of counseling lift off my shoulders. I consider myself to be an outside-the-box, creative individual. Why had I not considered this to be counseling? In continuing to discuss the situation, my mentor encouraged me to further expand my definition of counseling. “I think we all need to broaden our perspective on what constitutes counseling,” she said. “We get hung up on the picture of therapy and forget that it is all about meeting the needs of the client.”

What makes this situation even more embarrassing is that I specialize in working with individuals with dementia. Whatever their disease stage, I listen to them in the moment, meeting them where they are and identifying the feelings they are experiencing. How were my sessions with this client any different? I was meeting her where she was in the moment and reflecting on her feelings about the adventures on the train and the excitement about the idea of knitting again. It wasn’t my job as a counselor to contradict her story or her sense of her own abilities. It was never about the content. I was that person sitting next to another human being who just wanted to be heard. This situation was beyond counseling techniques and textbook knowledge. This was person-centered empathy at its core. I realized then that even when I question whether I am helping, I am.

 

Providing a sense of safety and security

Knowing how to respond to a client’s concern — which may or may not be based in reality — can be challenging. For example, I met an individual with late-stage dementia who wanted to leave a locked unit to get to his wife, who was sick. He walked from door to door trying to get out. Although the client’s wife was not sick, at first I didn’t correct his misapprehension. Instead, I asked myself how I would feel if my partner were sick and I couldn’t get to them. Then I said to this individual, “That sounds scary, and I know you are worried.”

In cases such as this one, there is some debate about which technique is appropriate: therapeutic lying or validation therapy. I side on using both techniques to keep an individual calm and limit the potential for agitation and aggression. In this instance, I told the client that his wife was safe, and a sense of calm came over him.

In some cases, it’s most therapeutic to just “go along” with the client. I often meet individuals in the later stages of dementia who walk up to me and say, “It’s been such a long time. It’s wonderful to see you.” Except I have never met these individuals before. But how would I feel if I encountered someone I always enjoyed spending time with whom I hadn’t seen in a long time? I would feel excited. So, I will often respond to these individuals by saying, “It has been a long time. It is so nice to see you again.” Responding like this often elicits a warm smile, hug or handshake from the person.

Sometimes the only choice is to support and affirm a client’s recognition of a painful truth. The client I referenced originally knew that her memory was fading, and that was her worst fear. How would I feel under the same circumstances? I would feel scared. I told her, as I tell other clients in similar situations, that what she was experiencing sounded scary but that she was safe with me, that I was here with her. Letting clients know that they are not alone in their fear is crucial. Individuals with dementia are frequently looking for a sense of safety and security.

In addition to reflecting on clients’ feelings, it is also important to know who they were before the disease. What did they do for a living? Were they a parent? Did they love dogs? What was their favorite holiday? This is where counseling is really out of the box and creative.

Learning clients’ interests presents opportunities to engage them by tapping into all five senses — sight, sound, touch, smell and taste. It also provides opportunities to learn and focus on what they can do rather than what they can’t. How? Envision a client who enjoyed going to baseball games. Unfortunately, the client is no longer able to attend games because it stresses the client to have their environment changed frequently. But what would stop a counselor from tapping into the sights and sounds of a baseball game and encouraging the client to put on their favorite baseball hat and look through baseball cards or pictures, eat a hot dog and, if possible, listen to a game on the radio? As the client enjoys the experience, the counselor could encourage the client to share thoughts and memories about the game. One word of caution: Never attempt to engage a client by asking, “Do you remember?” Also, never underestimate the power of a little  humor.

Two of my favorite examples of how knowing clients’ backgrounds can positively affect therapeutic interactions with dementia involve a former member of the military and an ex-government employee. In the first case, I was working in a psychiatric hospital, and an individual with dementia started to get agitated. A case manager I was working with said to this individual, “That is not behavior becoming of an officer.” I was amazed at how this individual settled down. My co-worker had taken the time to learn important details from the individual’s past that could help in his care. The second case involved a client who had worked with the government in a position involving maps. To give him a sense of purpose and an opportunity to engage in something he enjoyed, the staff gave the client maps that he could “work on” throughout the day.

When talking to other counselors about how effective it is to connect clients with what they enjoy, I ask them to imagine themselves in a similar situation. What would they want others to know about them? If they were feeling alone, lost, scared or confused, what favorite sights, sounds, smells, tastes or tactile sensations would soothe them? I know that for me, wearing a cardigan and flip-flops, sipping a pumpkin spice latte, holding a dog, and looking at pictures of Halloween decorations would do the trick.

 

An overwhelming need

The individuals I have described are only a few of the 50 million people worldwide who currently have dementia, according to the World Health Organization. The increasing number of individuals with dementia is overwhelming. To me, what feels even more overwhelming is the number of counselors I meet who do not have the knowledge and skills to work with someone with dementia. Recently, while giving a presentation on counseling individuals with Alzheimer’s disease, I asked the participants to raise their hands if they could answer yes to the following questions:

1) Do you have a basic understanding of the medical aspects of Alzheimer’s disease, such as symptoms, behaviors, and the process of receiving a diagnosis?

2) Do you have a holistic viewpoint of the person with this diagnosis: a psychosocial history, who they are, what their likes and dislikes are, their perception of their own lives, and their perspective about being diagnosed with Alzheimer’s?

3) Have you reflected on and identified your own biases, stereotypes, and stigma regarding people living with Alzheimer’s?

4) Are you aware of counseling techniques that are effective when working with individuals with the disease?

5) Are you aware of resources that could assist these clients, such as neurologists or other specialists, support groups, and informational literature?

Unfortunately, none of the attendees could answer yes to any of the questions. Admittedly, it is currently difficult to acquire the information that might have enabled them to answer yes. While doing my own research, I found only a handful of articles that discussed counseling individuals with dementia. Of those that did, most focused heavily on caregivers. I do not want to discount the impact of the disease on caregivers. However, those who are struggling with dementia have an urgent need for support. How can counselors meet their needs if they are unable to learn how?

We are living in a time in which you may not hear much about dementia, but its effects can be found around every corner. Fear and stigma surround the disease, making it more difficult for those affected to get help. Almost daily, people who know I specialize in working with individuals with dementia approach me about someone they know who is impacted. I wish I could put on a cape and help them all. My call to the counseling profession and fellow counselors is this: I need your help. Ask yourself if you can answer yes to my presentation questions. Do you have a general understanding of dementia — a disease affecting more than 50 million people? What personal biases and stereotypes may be preventing you from working with these individuals? Do you know which counseling techniques are most helpful when working with people with dementia?

I was speaking with a friend the other day who has early onset dementia. She was struggling with not being able to help more people. I told her that all we can do is help one person at a time. I guess this is my philosophy in counseling. If I help one person with dementia, it is worth it. I will no longer question if what I am doing is counseling or if I am helping, because it is and I am.

 

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Jenny Heuer is a licensed professional counselor specializing in gerontology. Older adults are her area of expertise in clinical practice, teaching, and research. She is a certified dementia practitioner and adjunct instructor at Georgia State University’s Gerontology Institute. Her passion is opening up dialogue about the lived experiences of individuals with Alzheimer’s disease. Contact her at jenheu77@gmail.com or through her website at jennyheuer.wixsite.com/aging.

 

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Related reading: Look for an in-depth cover story on working with clients with dementia, and their families and caregivers, in the upcoming January issue of Counseling Today.

From CT Online: “Understanding the gap: Encouraging grad students to work with an aging population

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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.

Facilitating support groups for caregivers

By Brooke B. Collison July 8, 2019

The 40 million adults in the U.S. identified as caregivers often find themselves overwhelmed, lonely and depressed. They provide care on a part-time or full-time basis for individuals — usually family members — who, because of health or other reasons, need assistance with activities of daily living. Facilitated groups can provide a nonjudgmental framework for caregivers to find understanding and support from others who are in similar situations. Support groups can be self-sustaining, but they function best when a professional counselor or trained facilitator assists group members with their processing.

A gentle but convincing nudge from my spouse started my volunteer work as the facilitator of a caregiver support group six years ago. I continue to serve caregivers in that role today. My experience as a facilitator has allowed me to make a contribution in my retirement, and I encourage other counselors to explore the same possibility.

Enormous variability exists in caregiving situations, but common among them are conditions that are of high concern in aging populations: dementia, Alzheimer’s disease, chronic illness and other age-related deterioration. The three individuals my wife pointed out to me in church that Sunday morning had become full-time caregivers of spouses with Alzheimer’s disease. My spouse said to me, “They need a group. You should do something.”

The first group started with a direct invitation from me: “Would you like to get together with some other caregivers to have a place to talk?” I was met with quick affirmative responses from two of the three people I approached, and they were soon joined by a few others who heard something was beginning. Over time, the group grew to a dozen members, with some joining and some leaving as caregiving situations changed.

Nine deaths of care receivers occurred during the first three years before the caregivers decided to dissolve the group, having worked through the stresses and strains of caregiving, as well as the agonies and life-change issues of death. Among the caregivers in that first group were spouses, adult children, relatives of care receivers, and an employee of a care center. Although the medical and physical issues of care receivers were varied, the issues of being a caregiver seemed universal.

The support group was probably therapeutic, but it was not therapy. Although I have been a licensed counselor, I was the facilitator for the group, not the therapist. People entered the group voluntarily, and there was no contract that described my behaviors, philosophy or approach. I had retired as a counselor educator and did not renew my counseling license. So, I would clarify to new members that my role was to facilitate the discussions in the group. I also stated that I had no expertise in any of the medical issues being experienced by the care receivers. I explained that, as the facilitator, I would help manage the discussion, ask questions to clarify issues and, if I felt it necessary, remind members of the few general ground rules they had established for themselves: Treat personal situations and conversations with respect, don’t dominate, listen, and accept another person’s feelings and emotions as legitimate.

I do have a philosophy about support groups. I believe that most of these groups can develop to a point where they can manage their own issues and in-group communication. However, I saw part of my role as being somewhat protective of vulnerabilities among group members. If a member expressed strong feelings that might be contrary to the beliefs of another member, I would monitor critical responses. For example, if a caregiver expressed anger at a spouse or partner — “He makes me so mad when he …” — I would listen for the “You shouldn’t feel that way” response. This seldom happened, but when caregivers are living by the “in sickness and in health” vow they took at the beginning of their marriages, they can have a set of values that discourage anger toward or criticism of a spouse.

My belief is that the primary value of caregiver support groups is to provide a place where caregivers can give voice to stressful experiences, strong feelings and personal frustrations in the company of others who, ideally, give verbal and head-nod agreement with the issue rather than criticism or value-laden responses that only make these difficult feelings intensify. In short, caregiver support groups should provide what most people in the caregiver’s larger circle cannot give — authentic empathic understanding.

There have been times during the life of caregiver groups when I moved from the role of facilitator to member. I became a caregiver when my spouse broke her hip when we were traveling out of state, resulting in surgery and several months of recovery. At one session, I moved from “my spot” in the circle to a different chair and announced, “I’m a member today, not the facilitator.”

I proceeded to share an experience in which I had become quite upset over a huge mix-up in communication with my spouse that had left each of us very angry with the other. At the time, I saw our inability to clearly communicate — both in sending clear statements and in not understanding statements — as a scary image of what our future might become as we grew older. The communication mix-up, which became funny in time and with perspective, loomed at the time as a grim picture of a possible future. Members of the support group heard my story, shared their similar concerns, and accepted my worries. When I shared the same episode with other friends, it drew none of the same empathic understanding.

In a second major block of time in the same support group, I became more member than facilitator after my spouse was diagnosed with an untreatable brain cancer and lived only three more months. I remained in the group as a member, and another person took up the facilitator role very effectively.

Several kinds of support groups can be found in most communities. I prefer a noncurricular support group. In these groups, discussion topics emerge from the issues that caregivers bring to the sessions rather than from a predetermined agenda. Many support groups, especially those established for a fixed number of sessions, operate from a curricular base — sometimes even with a textbook — and have specific topics identified for each session. Other support groups may become more instructional in format. I believe the noncurricular support group provides the best opportunity for members to talk about the critical concerns and issues they have in the caregiver role and to find the greatest empathic understanding among a small group of people who share somewhat similar life situations.

Caregiver issues

In the caregiver support groups I have facilitated, members have raised a broad range of issues, including:

  • Loneliness
  • Depression
  • Role reversal
  • Becoming an advocate for the care receiver’s medical and social needs
  • Preparing for the care receiver’s death
  • Money/estate issues
  • Sexuality
  • Respite
  • Handling inappropriate questions and responses from others
  • Lack of patience
  • Anger
  • Relationship changes
  • Asking for, accepting, giving and refusing help
  • Decision-making for self and others
  • Concerns for their own health
  • Conflict with parents/siblings
  • Change in social supports
  • Moving the care receiver to a care facility and being an advocate for
    them there

I will comment on a few of these issues more specifically to demonstrate the value of a noncurricular caregiver support group.

Loneliness characterizes the lives of most caregivers to a certain degree and becomes extreme for some. Becoming a caregiver means that a person’s world changes. Day-to-day employment, recreational and social activities no longer exist for that person in the same way. In cases in which the care receiver’s dementia or other cognitive dysfunction begins to increase, the caregiver discovers that the person, although still physically present, begins to disappear. Loneliness becomes a way of life, as the years of sharing spirited discussions each morning over newspapers and coffee turn into coffee and silence. It isn’t uncommon in a support group to hear someone say, “She’s/He’s just not there.” The support group becomes a loneliness antidote for many members.

Depression is another common topic in caregiver support groups. More than a third of long-term caregivers experience depression, according to surveys reported by AARP. Caregivers might not use the word “depression” as they talk, but the behaviors and emotions they discuss often reflect that condition. In several group sessions, after a member has talked about depressed status, I have heard other members respond along the following lines: “I was feeling that way after my wife was at home for two months, and my physician labeled it as depression. I’m still on a prescription for antidepressants, and I think it’s perfectly OK to be on the pill.”

Role reversal happens in some fashion for nearly all caregivers who have had a long relationship with the care receiver. Couples who have been together for years and have fallen into clear divisions of responsibility around money management, food preparation, driving, decision-making and other tasks will discover that either physical or mental limitations force role changes. For example, the partner who never wrote a check finds that checks, credit cards, bills, tax preparation and all other money matters now fall under their domain. The person’s reaction to this can be either positive or negative. Being the fiscal manager may give the partner feelings of responsibility and control that they have not had before, or it can be experienced as an overwhelming burden that leaves the person feeling totally incompetent. Discussion of the effects of role reversals can be quite revealing to self and to others. If one partner who seldom drove the car because the other partner was extremely critical is now forced to become the driver — only to discover that the criticism from the nondriving care receiver only increases — relationship stress will multiply.

Lack of patience has been voiced by nearly every caregiver with whom I have had a group experience. As the person they care for starts to slow down physically or as their daily living abilities begin to disappear, caregivers see their daily load increasing, leaving them with less and less time to manage everything that needs to be done. Caregivers will often say their lack of patience is mixed with anger, even when they know it takes the care receiver longer to do nearly everything or that tasks and functions are forgotten or items misplaced. “It now takes 45 minutes to get from the house to the car, and I can feel my anger increasing with every minute. It makes us late for every appointment, and I have to start earlier and earlier for everything we do.” This statement brought unanimous head-nod agreement from an entire group. The discussion shifted to the resulting feelings of anger and loss, then moved into individual strategies for handling impatience and increased time requirements.

Becoming an advocate is a role that some people relish and others avoid. Caregivers are generally thrust into the role of patient advocate with the medical system, the care facility complex, and their surrounding social system in general. Frequent support group discussions have begun with a member telling their story of the previous week’s battle with some element of the complex that serves their care receiver. Sometimes these stories are ones of frustration, feelings of helplessness and lack of needed information. At other times, the story might emerge as a powerful feeling of accomplishment: “Yesterday, I met with the administrator of the assisted-living facility and demanded more attention to medication schedules.” These are moments for groups to celebrate, especially when caregivers who describe themselves as hesitant to challenge authority relate successful actions on behalf of their care receiver. Sometimes, when a discouraging episode has been shared, other members have related to the same issue or provided inside information gleaned from their own trying times. Some have even volunteered to accompany the caregiver to the next appointment.

Respite is labeled by experts as one of the most essential elements of caregiver health. As a topic in a support group, discussions frequently focus on how time away, or relief or respite care, would be appreciated. Simultaneously, caregivers will talk about how respite or any form of time away is impossible. This is frequently tied to the personal belief that the caregiver is the only person who can or should fulfill the task of giving care.

Help becomes a common discussion topic in one of several forms: Where do I get help? How do I ask for help? How do I turn down help? Embedded in many of these discussions are personal core values about what giving or receiving help really means. It is one of those topics where it would be easy for a facilitator to slip over into a therapist role. When caregivers describe how it is essential that they be the one who does everything and how impossible it is for them to accept help with any of their caregiver duties, the natural tendency of the trained therapist is to probe or confront or interpret in order to explore parental and other messages about help. It is also one of those situations in which group members may step in with their own illustrations of what help means, where their core values about help came from, and how their beliefs about help either facilitate or inhibit their functioning as caregivers. In staying away from my therapist tendencies to remain a facilitator, there are times when I can smile later and say to myself, “The group is doing what a good group does; they don’t need me to be the therapist.”

Information needs are high when someone first takes on the caregiver role. In early stages, they may be bombarded with pamphlets from their physician about specific diseases, friends may tell them about books to read, and technologically informed caregivers may search the web for sources. New caregivers are often directed to information support groups; medical facilities may offer groups for individuals with similarly named conditions. I find these groups helpful during the early information-gathering times, but their helpfulness diminishes when the caregiver gets deeper into the caregiving experience and discovers that information is important but not enough. It is more valuable for the caregiver to have a place where they can say, “My life is slipping away, and I don’t know what my future will be,” with six or seven people nodding in agreement. Then one of them says, “Yes, some days I don’t have anything that resembles my life before.”

Other issues common in support groups include concerns about money because long-term illness is expensive. If other family members are involved, conflict with siblings or other relatives is inevitably a cause of stress for the caregiver. Sexuality is usually discussed in the group relative to hygiene and physical care by others, but on more than one occasion, caregivers have dug in to issues of appropriate and inappropriate sexual behavior in care facilities. In a support group, caregivers may find an environment where they can talk about impending death, even anticipating relief when it comes. Often, caregivers will agonize over the decision to place their loved one in a care facility, then have additional agony with second thoughts and regret after the decision has been made, even though the decision will be described as “the right thing to do.”

Support group procedures

I believe the best way to create a caregiver support group is by invitation. Within any group of older people, it is likely that some will be serving as caregivers. Over time, that number will increase. (AARP provides good summaries of this trend at its website, aarp.org; the organization’s reports and resources are easily accessible by typing “caregiver” in the search field.) Posting announcements of a caregiver support group will attract a few people, but many people are reluctant to attend without a direct invitation.

Support groups function best when there are enough people present for good discussion but not so many as to restrict individual participation. My ideal numbers range from eight to 12 participants. I have worked with both larger and smaller groups that seemed effective, however.

Groups have a beginning and an end and can be announced as such. The open-ended entry and exit group can go on for years; facilitators need to be clear about what they are agreeing to do when they begin a group with no clear end. Ending a group and then resuming later with the same members can be effective. This can also serve to ease the transition of new members in and old members out if they choose to leave. I strongly encourage some kind of summary or ceremony when group members depart. Likewise, I urge groups that decide to end to develop a concluding summary and ceremony.

Caregiver groups, by the very nature of what brings people to the group, will morph into grief groups. In my experience, people generally wish to remain with their caregiver group rather than shift to a separate grief recovery group because of the close relationships they have formed and the comfort that comes from being with people who know their story. As group membership begins to reflect more people whose care receiver has died, it does make it more difficult for new members to join.

Volunteer versus paid facilitation is an issue for many counselors. My participation is as a volunteer. In my community, support groups exist that are tied to medical or service agencies in which the facilitator might be a paid employee. There might be instances in which insurance would cover the cost of an ongoing support group, but this is not as likely for an open-ended group as it is for a fixed-length program.

Counselors in private practice could offer support groups for which members would compensate the facilitator. Under those circumstances, members could enter the group in the same way they would enter counseling sessions — with a contractual understanding of the role of the counselor who is operating with a prescribed set of ethics and an appropriate license.

I believe it is important for group facilitators to have a person they can go to regularly to discuss issues that arise for them in the facilitation role. In the same way that we expect counselors to have clinical supervision, facilitators need to seek this support. I get this through occasional coffee sessions with a friend who is a clinician.

I urge counselors to find or to create support groups that make use of the facilitation skills that counselors possess. Caregivers in their communities will be the beneficiaries. The service meets a critical need, and the satisfaction that facilitators will experience is beyond measure.

 

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I’d like to thank Bob Lewis and all the other caregivers over the years who have taught me what I know about support groups. I appreciate the stories and feelings they have shared and for the support they have given each other in such meaningful ways.

 

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Brooke B. Collison is an emeritus professor of counselor education at Oregon State University. He is a fellow and a past president of the American Counseling Association. For the past several years, he has served as a facilitator for caregiver support groups as a volunteer activity in his retirement. Contact him at BBCollison@comcast.net.

 

 

Letters to the editor: ct@counseling.org

Knowledge Share articles are developed from sessions presented at American Counseling Association conferences.

 

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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.

Understanding elder financial abuse

By Joanne Cohen April 27, 2017

 

“All forms of elder abuse are acts of violence” — Margaret Hudson (1991)

 

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With the aging of the baby boomers and advances in medicine and technology, more people are living into old age, and more elders are experiencing abuse. According to the National Center for Elder Abuse, at least 1 in 10 elders report some form of abuse. And according to the National Elder Maltreatment Study of more than 6,000 elders and proxies, the most prevalent form of elder abuse is financial in nature, eclipsing both elder emotional abuse and elder neglect.

Financial offending is behavior that targets and takes advantage of elders for personal financial gain. Financial offenders (aka fraudsters, scammers and con artists) lack empathy for their victims. They groom victims by promising rewards for financial giving. They may promise products, services, time, money or even social-emotional needs fulfillment, including safety, security, belongingness, love and self-esteem.

 

Profiling fraud

Fraud by strangers mostly takes the form of marketing and mail fraud. From the fraudster’s perspective, it is “a business.” Fraudsters use psychological manipulation of emotion to evoke giving. They use catchwords and phrases designed to arouse feelings of pride and good will for giving, and guilt and fear for not giving. They say things such as, “Her life is in your hands”; “Save Social Security”; “Secure our borders from illegal immigrants”; and “The cure is just around the corner.”

Fraud conveys the appearance of legitimacy with words that sound credible (e.g., “official postal notice”) and names that sound familiar (e.g., Children’s Wish Foundation). It often taps into patriotic duty and religious value, using symbols such as flags, eagles, crosses and stars. It may evoke a sense of urgency with expressions such as “last chance offer.” Fraudsters produce hopes of financial reward by implying that their targeted victims have already won. Elders who respond to fraudulent pitches are placed on a “sucker list” that is sold again and again.

 

Profiling exploitation

Family member caregivers commit the majority of financial exploitation of elders. Family caregivers exploit as a function of personal burden rather than as a result of the burden of caregiving. Compared with burdened caregivers who do not exploit, exploiters are more likely to be occupationally, financially and mentally unstable; are more apt to have an addiction; and are more likely to be financially dependent on the elder.

Family caregiver exploiters are seen to use avoidance more than acceptance strategies to manage conflict, and they equally isolate victims and threaten abandonment if a report is made. Exploiters use intimate knowledge of the elders’ vulnerabilities to portray victims as weak and dependent. Although they may feign interest in receiving help, caregivers who exploit elder family members should not be included in counseling except in post-adjudication restorative justice.

 

Risk factors

Elder cognitive impairment is the single greatest risk factor for all forms of elder abuse. It is strongly associated with various forms of financial abuse, including money mismanagement, negligence, fraud and exploitation. In addition to being a risk factor for financial abuse, cognitive impairment can be exacerbated by financial abuse. Financial abuse disturbs the elder’s capacity to know what is real and whom to trust. The victim may feel confused and disoriented, as though he or she is going crazy.

Other risk factors for all forms of elder abuse include elder mobility problems, being homebound, medical and psychiatric conditions, substance abuse and social isolation. Although social isolation can be a symptom of mental illness, it can also indicate a fear of retaliation for seeking help.

Financial worries and fear of losing financial control are very common in old age. Elders worry about the cost of living, health care, long-term care and the financial struggles of adult children. In a 2014 Pew Research Center survey, about half of adult children reported financial dependence on aging parents to meet the cost of living. Economists explain that today’s generation of adults is the first to not surpass their parents’ financial success. Because elder financial worry is associated with financial risk-taking, such as falling prey to scams and risky investments, it is considered a risk factor for abuse.

Finally, there is a particularly high risk for elder financial abuse during times of crisis and transition, such as after the death of a spouse or during recovery from a fall. At these times, elders are more vulnerable to others gaining financial control under the guise of helping.

 

Reactions to financial abuse

The reactions of elders to financial abuse parallel the reactions of victims of all ages to various types of abuse. These reactions include denial, avoidance, confusion, hurt, betrayal, anger, embarrassment, shame, guilt, helplessness, hopelessness, mistrust, dissociation, hypervigilance and paranoia. Symptoms of elder financial abuse mimic those of depression, anxiety, posttraumatic stress disorder, dementia and even psychosis. Helplessness, hopelessness, diminished self-worth and social withdrawal are so common among victims of elder financial abuse that their presence should always signal the need for an abuse assessment.

Elders are often reluctant to acknowledge being the victims of financial abuse. This reluctance to report is associated with a host of fears, including the fear that:

  • Nothing will be done
  • The victim won’t be believed
  • The victim will be blamed or shown to have personal flaws
  • The perpetrator will be harmed
  • The family will be broken
  • The report will incite retaliation, abandonment or institutionalization

Reluctance to report financial abuse is also due to the emotional, physical and financial toll that abuse investigations take on victims. It is much simpler not to deal with an investigator who needs to examine financial records, review changes in assets, and create timelines of transactions and who was involved. Elders are typically discouraged from filing reports; only about 1 in 5 cases of family exploitation and 1 in 25 cases of stranger fraud are reported.

In addition, prosecution rates of financial abuse are low because family members are seen to have tacit consent to access elders’ finances and because strangers are hard to identify. Even in successfully adjudicated cases, no remuneration is afforded. When one elder called her state attorney general’s office to ask for help with mail fraud, the spokesperson said, “The magnitude of the problem is so great that we simply cannot investigate every case.”

 

Counseling principles and practices

Principles that guide counseling for child abuse can also be applied to counseling for elders who have suffered financial abuse because the dynamics are very similar. Many of the risk factors are the same (cognitive limitations, mobility problems, social isolation). Symptoms are the same (fear, confusion, hopelessness, hypervigilance). Reasons behind the reluctance to report are the same (fears of not being believed, facing retaliation, breaking up the family, being institutionalized). Threats and intimidation for reporting are the same (isolation, withdrawal of help, exposing inadequacy). And social position is the same (dependent, protected).

Referring financial abuse victims to financial experts who can confirm assault is an important part of counseling. Expert verification decreases cognitive confusion and provides emotional relief for victims. One mail fraud victim finally acknowledged being scammed when his bank manager said, “This unfortunately happens a lot. At least you caught it early.”

Financial abuse stresses an already stressed system, and victim allies may need to help produce financial records, close accounts, set up online payments, vet the mail, provide emotional support and so forth.

The passage of three laws in 2010 laid the foundation for developing integrated elder abuse services. First, by mandating states to develop adult protective service laws, the Elder Justice Act produced a common language to talk about elder abuse problems. Second, by requiring states to develop adult protective service systems, the reauthorized Adult Protective Service Law expanded state and national elder abuse detection, investigation and reporting. Finally, by funding elder mental health screening under Medicare and elder mental health counseling under Medicaid (for states opting in), the Affordable Care Act elevated the provision of elder mental health services.

In 2015, the White House Conference on Aging asserted that best practices in elder abuse prevention are multidisciplinary. This means that counselors will be called on to detect, investigate and report elder abuse in collaboration with diverse professionals. Multidisciplinary prevention of elder abuse will work much like the National Children’s Advocacy Center (NCAC) model, but instead of aiming to prevent child abuse one child at a time, its aim is to prevent elder abuse one elder at a time.

 

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Joanne Cohen is a professor and coordinator of the marriage, couple and family counseling program in the Department of Counselor Education at Kutztown University. She is a national certified counselor and licensed marriage and family therapist. Cohen specializes in trauma and addictions counseling, prolonged exposure counseling and client-centered counseling process and supervision. She serves as a volunteer assistant ombudsperson for a county office of aging and adult services. She is trained in the NCAC multidisciplinary treatment approach to child abuse prevention. Contact her at cohen@kutztown.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.