Tag Archives: Adult Development & Aging

Adult Development & Aging

Embracing the realities of retirement

By Chris Morkides June 8, 2022

In the 1977 song that would become an unofficial anthem for his legions of fans, Jimmy Buffett famously sang about “wasting away in Margaritaville,” “searching for [his] lost shaker of salt” and doing many of the things that people contemplating retirement expect to do when they leave the full-time workforce behind and dive into their golden years.

So, perhaps it’s not surprising that Buffett, now in his mid-70s, has a retirement community in Florida that was named one of Where to Retire magazine’s “50 best master-planned communities in the U.S.” in 2019.

It turns out that retirement is about master planning. And maintaining social networks. And finding meaning. In other words, it’s about many things that professional counselors can help to guide clients through, whether these individuals are contemplating retirement or already retired.

Retirement as a developmental stage

“People are living longer and retiring earlier,” says Louis Primavera, a licensed psychologist who co-authored The Retirement Maze: What You Should Know Before and After You Retire with Rob Pascale and Rip Roach. “And it means that retirement has changed from a short-term event to another developmental stage.”

Before writing The Retirement Maze in 2012, Primavera and his co-authors surveyed 1,500 retirees and 400 people of retirement age who were still in the workforce to see how the two groups compared emotionally, to look at the expectations of prospective retirees and judge whether those expectations were realistic, to uncover problems encountered by retirees and, finally, to put those problems under a microscope and determine how best to deal with them or avoid them altogether.

The first issue Primavera, Pascale and Roach had to resolve before disseminating the survey was to formulate a definition of “retirement.” Coming up with a definition was not easy because many retirees still work to some extent. What distinguishes them from people who work full time?

“Working retirees,” Primavera and his co-authors wrote, “tend to be less emotionally invested in their jobs and have more say as to the terms of their employment, such as the types of tasks performed, or the number of hours worked. Also, retirees think of themselves as retirees.”

“Retirement is no longer seen as the complete end of work after a career of full-time jobs,” they added. “Instead, work is now seen as one potential element of the retiree lifestyle.”

Retirement is a process. Some individuals adjust well to retirement within months. For others, the adjustment takes years. Primavera, Pascale and Roach wrote that three elements are key in a person’s ability to adjust: health, financial stability and subjective well-being. Subjective well-being, simply, is a person’s happiness. That happiness is affected by productivity, self-esteem, a feeling of being in control, a sense of purpose and a sense of being connected to others.

Retirement, then, isn’t as easy as deciding to spend more time with the grandchildren. In fact, as many retirees experience firsthand, it can be very hard work.

“People start out flying when they retire and they’re doing well,” says Primavera, who estimates that 40% of people who retire aren’t fully adjusted within one or two years. “Then, things change. There’s confusion. What am I going to do with my time? How am I going to structure my day? When people first retire, they might get up late, they might not change their clothes. They’re on vacation.”

All vacations end though. Which leads to a question that retirees and prospective retirees routinely ask themselves: Now what? 

Although workers might spend a portion of their days lamenting how much they hate their jobs, work provides structure. But with no imposed structure after retirement? With a gap in meaning that was previously filled by work — even if that work could also be a source of anxiety? Now what?

The importance of structure

“Structure is the most important thing in all this,” Primavera says. “You take people who are seriously mentally ill. One characteristic, no matter what the diagnosis, is that they’re totally unstructured. It’s the same for everybody. A lot of people have had trouble through the pandemic, for example. What structure was there? A lot of people have been flying by the seat of their pants.”

The quality of the structure is also significant.

“Structuring your days so that you’re including exercise and social activities and not just staring at a TV is important,” says E. Christine Moll, a counseling lecturer at Kean University in Union, New Jersey, and a past president of the Association for Adult Development and Aging, a division of the American Counseling Association. “Maybe you’re going out for coffee every day. Maybe you’re volunteering one or two days a week. Maybe you’re having meals with family, meals with your neighbors. That’s structure.”

Professional counselors can discuss the importance of structure and ways that their clients can implement it. The goal is not for clients to know what they will be doing every second, minute or hour of every day; it’s that they will understand the importance of doing something.

Structure isn’t something that most people who work full time find it necessary to consider. They typically wake up to an alarm, make breakfast, and hustle out the door with a cup of coffee in hand to go to a job that they may or may not like. They follow this routine the next day and the next day and the next day, relax on the weekend, and the cycle repeats itself when Monday comes around.

But when there isn’t a job to go to, structure is no longer a given. It’s up to retirees to create their own structure. 

“People need a reason to get up in the morning,” says Deborah Heiser, founder of The Mentor Project and co-editor of the book Spiritual Assessment and Intervention With Older Adults. “That doesn’t change when you retire.”

‘Piecing’ together retirement

No matter how much planning and counseling are conducted beforehand, many issues can crop up and surprise clients once the initial euphoria of not having to report to the office wears off.

Take, for example, the social piece.

“If you examine it, 40% of your social network [is] people you work with,” Primavera says. “So, you’re losing a big part of your social network.”

“People might be having problems at work, with obligations, with other aspects,” adds Heiser, an adjunct professor of psychology at the State University of New York College at Old Westbury. “But work still gives us an opportunity to socialize with each other.”

For “the client who lives alone, the social piece is very important,” says Sharon Givens, a licensed professional counselor who specializes in career counseling and heads the Visions Counseling and Career Center in Charlotte, North Carolina. “They don’t have co-workers they can engage with on a daily basis. They can volunteer, take on part-time positions, anything that keeps them in contact with other people.”

Getting involved in new activities is one way for retirees to meet other people. Reestablishing connections with old friends and family — many of whom the retiree may have unintentionally neglected due to responsibilities imposed by work — is another way to satisfy the need for socialization.

“The person you might see three times a year, increase the number of those contacts,” Primavera advises. “There’s someone I know, Bob, he’s retired, and we have lunch every three or four weeks. He has lunch with other friends. We all have friends we probably don’t see often whose company we enjoy. If you’re retired, it’s easier to see them.”

There is also the meaning/identity piece to consider as it relates to retirement. Go to a social gathering, and one of the first things people ask is what you do. It’s an easy answer when you’re working: “I’m a lawyer.” “I’m a doctor.” “I’m a truck driver.”

The answer isn’t as easy after retirement, although it still exists. It just might take some time finding it.

“You can get meaning by volunteering in something completely different than your career or by giving back by using the skills you learned in your career. You know, like financial people volunteering to do financial work at a senior center during tax season,” Moll says. “You can do Meals on Wheels. You can do anything that gives you purpose. And that changes. It’s not for me [the counselor] to say what brings purpose. It’s for the person to find out.”

There is also the couples and family piece. Both members of a couple might work or only one may be employed. Whatever the situation, it changes when one partner decides to retire. To minimize potential problems, it could be a good idea to go through couples or family counseling before one of the family members drops out of the workforce.

“The client should have conversations with the family about what they’re planning on doing, what it might mean,” Moll says. “You might want to talk about … what happens to the family dynamic after retirement.”

And what if a client decides they want not only to retire but also to move in the process? True, people can connect via the internet, and friends and relatives can visit retirees in, say, Florida. “But I don’t know if absence makes the heart grow fonder,” Moll says. “That’s something that can be discussed in counseling beforehand.”

Surveying the horizon

Givens uses what she calls the SWOT approach when counseling clients who are considering retirement.

“It’s about discussing strengths, weaknesses, opportunities and threats a person might encounter,” she explains. “What new opportunities could retirement open up? What problems could retirement present? Is the person ready financially? Emotionally?”

To get clients to think about post-retirement life, she asks them a question: “What will you do that you couldn’t do because you’ve been working?”

Kimberly Johnson, a licensed mental health counselor in New York and program director for clinical mental health at Touro College, now works primarily with frontline workers navigating the coronavirus pandemic. But she has counseled people navigating life transitions, including retirement, throughout her 25-plus years as a counselor.

Johnson remembers one client who came to her initially to work on other issues. But as Johnson counseled her client, she realized that much of the client’s angst stemmed from her job.

“The environment at work had come to a place where she just didn’t feel like she wanted to stay anymore,” Johnson says. “She already was vested. She was going to have her pension. She probably would have stayed if the environment was better.”

The problem for Johnson’s client, who was in her late 50s, was that she felt that she was being forced out. Johnson wanted the client to look at the situation differently. “A lot of it was about having her think that she made the decision rather than the decision being foisted upon her,” Johnson says.

What did Johnson do to help her client get to a good place emotionally? “First, we role-played how she would confront her supervisor,” Johnson says. “And we tried to visualize what it would be like after she left and how she could prepare for it. We talked about potential feelings that might come up when she was gone.”

It all was about turning negative thoughts about retirement into positive thoughts. “She started to look at it not as an end but as a transition in life,” Johnson says. “She did a little bit of her own writing describing what her life would be like after leaving her place of employment and the kinds of things that she could look forward to. It was about not getting caught up in the grieving of this transition but also celebrating what was on the horizon.”

The result? “She did go through some grieving but was able to process that and move on to new activities,” Johnson says. “She found a way to kind of reinvent herself. As far as I know, and I haven’t seen her for a while, she is in a positive place.”

One size does not fit all

How does Moll counsel clients who are considering retirement? She says it depends on the client because — as in other areas of counseling — one size does not fit all.

“I do think that there’s sort of disenchantment that happens with work, like ‘I’m tired of this job. I’m ready. I’m ready to be done with this. I’ve given what I can give,’” Moll says. “It’s important as a counselor to work through that emotion and maybe ask, ‘Is it time to retire?’

“I might open up the conversation with what has to happen before you step away. To really have a conversation about, I guess, two to three areas of life — what needs to happen, what needs to be put into place so that the person can leave as seamlessly as possible from that position?”

Moll encourages clients to consult with financial advisers, and she emphasizes the impact that a person’s retirement will have on the rest of the family. “You should have conversations with your partner,” Moll tells clients who are considering retirement.

Heiser discusses the importance of clients finding purposeful activities such as Habitat for Humanity and talks to clients about redefining their purpose. “Your purpose could be your grandchildren. It could be gardening. It could be pickleball,” she says.

Heiser also stresses the importance of therapists being supportive of clients who are considering retirement. “Tell your clients that it’s OK to change [their] mind. It’s OK to take a part-time job. It’s OK if retirement isn’t exactly what you thought it would be. Tell clients that a lot of people are going through this at the same time,” she says.

Primavera emphasizes structure, which he contends is the single most important thing for someone to maintain in retirement. The form of the structure can change, however.

“You plan, but you also have to be flexible,” he says. “Be willing to try different things. Be open to new ideas.”

Primavera recounts a story about a person who was surveyed for The Retirement Maze.

“We interviewed a CEO who loved to play golf when he was still working. Every opportunity he got to play, he was out on the course,” Primavera says. “He retired a year later, and we asked how much golf did he play. He wasn’t playing anymore. 

“We asked, ‘Why not?’ He said golf was a distraction when he was working. When he retired, it became his job. So, the things you think you may want to do, you may not end up wanting to do them.”

Be flexible

This is where flexibility comes in. Work and golf and pickleball and all sorts of factors are intertwined. One factor changes — a person retires — and it has a ripple effect on everything else.

“The point is that we all have to figure out what is best for us,” Primavera says. “And the only way you do that is to experiment. You research and experiment. If I had a client who said, ‘I’m unhappy,’ I would say, ‘Well, what makes you happy? Let’s go out and try a few things.’”

Some of those new things might even turn into work.

“Retirement is a funny business,” Primavera observes. “People often will retire from a job and then go back and work part time. It’s not unusual. Or they’ll find another job [that] is like what they were doing. We call it a bridge job. We interviewed one guy who actually ended up working more hours after he retired than he did when he was working. We asked him why he considered himself retired. He said, ‘Because I can quit anytime I want to.’”

Primavera doesn’t want to leave his job as dean of the School of Health Sciences at Touro College or stop being a therapist or an author. He says he enjoys his work too much. And, besides, “I love talking about retirement.”

Moll tried out retirement once before after spending 33 years as a professor at Canisius College. Today, she is a lecturer in the Department of Counselor Education at Kean University and doesn’t plan on retiring again anytime soon.

“I still love teaching,” she says. “I’m happy being me and doing what I enjoy. And when I don’t enjoy this anymore, that’ll be my sign that I need to retire and maybe sit on the beach with some margaritas.”

insta_photos/Shutterstock.com

 

*****

Chris Morkides is a recently retired therapist trying to navigate the retirement waters with the help of his wife, Alisa, daughter, Kina, and two cats. Contact him at cmorkides@aol.com.

 

****

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.

Counselor participates in White House conference call, task force

Compiled by Bethany Bray June 26, 2020

American Counseling Association member Laura Shannonhouse added a professional counselor’s voice to two recent events organized by the White House.

Shannonhouse, an assistant professor in the Counseling and Psychological Services department at Georgia State University, is part of a cohort of researchers working on a grant-funded project on suicide and aging adults. A recent conference call brought this issue to the attention of some of the highest leaders in the country. In April, Shannonhouse participated in a call on COVID-19 pandemic’s effect on mental health that included U.S. President Donald Trump, Vice President Mike Pence and other senior administration officials as well as leaders from the Substance Abuse and Mental Health Services Administration (SAMHSA).

Earlier, Shannonhouse also traveled to Washington D.C. to participate in the White House Summit on Transforming Mental Health Treatment to Combat Homelessness, Violence, and Substance Abuse, held in December 2019.

In addition to Shannonhouse, the grant team includes ACA members Mary Chase Mize, Matthew Fullen and Casey Barrio-Minton. Funded by the U.S. Department of Health and Human Services’ Administration for Community Living (ACL), the project focuses on training home-delivered meals workers in suicide intervention and mental health basics.

According to the Centers for Disease Control and Prevention (CDC), suicide is the 10th-leading cause of death in the United States. For many age groups, however, it ranks much higher, including as the eighth-leading cause of death among those ages 55-64.

ACA Member Laura Shannonhouse participated in the White House Summit on Transforming Mental Health Treatment to Combat Homelessness, Violence, and Substance Abuse in December 2019. Photo via Georgia State University.

Q+A: CT Online sent Shannonhouse, Mize, Fullen and Barrio-Minton some questions via email, to learn more about the White House events, their grant work and related issues.

What do you hope comes out of the White House task force meeting and conference call?

These meetings were convened with the purpose of creating awareness about key mental health issues, sharing information about innovative practices and connecting with national leaders who are charged with addressing many of these issues from a federal perspective. In light of these meetings, we hope that federal programs and policies will prioritize the mental health of Americans of all ages. By attending on behalf of our federal grant, we hope to raise awareness about suicide risk among older adults, as well as the Medicare mental health coverage gap that interferes with many of these people from accessing care.

From your perspective, what do our government leaders need to know. What are the needs right now?

There are many pressing issues that affect the mental health of Americans. One such issue is the lack of access to licensed professional counselors (LPCs) for Medicare recipients. Regulations governing which mental health providers are reimbursed through Medicare were last updated in 1989. Since that time, the mental health marketplace has changed dramatically. Current Medicare policy is not aligned with the realities of mental health practice in 2020.

For example, when we reviewed the Psychology Today provider database, a popular tool for locating mental health providers, only 12.49% of providers in this database accepted Medicare. This means that 60 million Medicare recipients are left without access to a significant number of eligible providers, including LPCs.

How has your grant work on suicide prevention for older adults changed with the COVID-19 pandemic?

We have several partnerships with local agencies dedicated to meeting the needs of older adults. Due to the pandemic, many of these agencies are having to reconfigure entire programs to ensure that physical distancing measures are enacted. This means that many programs that previously met in person have to shift rapidly.

Even the best efforts to do this have, unfortunately, resulted in greater social isolation and loneliness among older adults. Our team is hoping to collect data on how the pandemic is impacting vulnerable older adults who rely on home-delivered meals programs. We want to illuminate how to best address socialization needs while nutrition needs are also met.

Looking ahead, what do you see as long-term needs in this realm, as the pandemic continues?

As the pandemic continues we anticipate that social isolation and loneliness will become increasingly greater issues, especially for older adults. In a recent study by the John A. Hartford Foundation and the SCAN Foundation, 83% of adults ages 70 and older stated that they were prepared to self-isolate for several months. Notably, after only one month of self-isolation, 33% reported increased feelings of loneliness since the pandemic became widespread. Therefore, efforts to connect with this population and ensure that their mental health needs are addressed is vitally important.

Tell us more about the connection between your work and the need for Medicare reimbursement for LPCs.

Our work focuses on identifying and assisting older adults who may be experiencing psychological distress or suicide risk. A major question, then, is what happens after they are identified and referred for counseling and other mental health services? The vast majority of these older adults use Medicare to access the health care system, including mental health, and as the counseling profession knows all too well, counselors are not currently eligible to be reimbursed through the Medicare program, something we have been calling the Medicare mental health coverage gap (MMHCG).

Although this is an issue that the majority of practicing counselors have experienced firsthand, most aging and health care advocates are not aware that it is a problem. They are generally aware of the behavioral health needs of older adults, but not aware that the exclusion of LPCs makes it more difficult to address these needs.

What are some challenges and bright spots that you would want counselors to know about the Medicare issue?

There has been a great deal of progress made in regard to Medicare advocacy for counselors. When lawmakers, federal agency leaders and the public hear about the outdated Medicare mental health provider policy, they are largely sympathetic and want to determine how they can help.

For example, there are two congressional bills that focus on adding LPCs to Medicare. These are both bipartisan bills with a high degree of support. House Bill 945 has 116 co-sponsors and Senate Bill 286 has 31 co-sponsors, and both of these numbers represent forward movement (Find out more from the American Counseling Association Government Affairs team at counseling.org/government-affairs).

In January of this year, the Center for Medicare and Medicaid Services (CMS; part of the U.S. Department of Health and Human Services) determined that LPCs are viewed as Medicare-eligible when they provide services within opioid treatment programs. This represented a major victory.

Then, in early May of this year, CMS made a similar determination within rural health centers/federally qualified health centers, as long as counselors are working in a manner that is consistent with their scope of practice. ACA and other members of the Medicare Mental Health Workforce Coalition are now advocating that LPCs be included in any future COVID-19 stimulus bills that Congress considers. These are all exciting developments that reflect years of hard advocacy work.

What do you suggest counselors who are passionate about these issues do to get involved and/or advocate?

COVID-19 has outsized effects on older adults, which means that our collective response to what our “new normal” looks like must be done with their needs in mind. What makes this pandemic particularly insidious is the way that physical distancing elevates health risks associated with social isolation and loneliness.

Local agencies that focus on aging are keenly aware of this, but may not have the infrastructure in place to fully address older adults’ mental health needs. Counselors should consider the many ways that their gifts can be invested in community efforts to keep older adults connected. At the local level, this might look like working alongside other colleagues to pool some pro bono hours that could be donated to your local area agency on aging so tele-counseling can be shared with at-risk older adults.

At the national level, it means responding to Medicare advocacy alerts so that policies can be modernized to address older adults’ mental health needs.

Whether you are a full-time counselor, student or counselor educator, making a difference also means combating ageism whenever it creeps up, whether it occurs in conversations with friends or family, on social media, or within healthcare or counseling professions. By asserting that older adults are every bit as deserving of mental health services as people of other ages, members of the counseling profession combat ageism, strengthen the case for Medicare reimbursement and improve the lives of socially isolated older adults. 

 

***** 

Learn more:

  • Matthew Fullen participated in ACA’s recent Government Affairs and Public Policy Town Hall, and spoke about the Medicare issue: youtube.com/watch?v=liXnCVlGomM

*****

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

***** 

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.”

 

****

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.”

 

****

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).

****

Contact the counselors interviewed for this article:

****

 

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/

****

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

 

****

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

 

****

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.

 

****

 

  • 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.

 

****

 

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

 

****

 

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.

 

****

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.

 

****

Related reading: Look for an in-depth cover story on working with clients with dementia, and their families and caregivers, in the January 2020 issue of Counseling Today.

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

****

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.