Going Purple with Jennifer Pilcher, Ph.D., CMC
Today’s family caregivers provide 83% of the help seniors in the United States receive. About half of these caregivers are providing help to someone with Alzheimer’s disease or another form of dementia. Caregivers help with an array of tasks, including hands-on assistance with personal care, grocery shopping, helping around the house, preparing meals, managing medications and medical care, coordinating and advocating for services, and providing transportation.
Caregivers take on a lot, but there often comes a time when they need the assistance of a professional in navigating the senior care system. And there is actually a whole profession of people who do this, called aging life care, or geriatric care management.
To learn more about aging life care professionals (also called geriatric care managers), we spoke with one of the best we know, Jennifer Pilcher, Ph.D., CMC. Jennifer runs her own aging life care practice called Clear Guidance. She is also the president of the New England chapter of the Aging Life Care Association. As an aging life care professional, Jennifer’s focus is on young-onset and atypical dementias.
There are currently 5.8 million Americans living with Alzheimer’s disease. Of those, 200,000 are under the age of 65. Although young-onset Alzheimer’s disease is relatively rare, we know that, as the overall prevalence of Alzheimer’s disease rapidly increases, there will be a growing number of younger people developing this disease. Young onset and atypical dementias look different from what you probably picture when you hear the term Alzheimer’s disease, and therefore individuals with these diagnoses experience unique challenges and needs, which Jennifer told us about in our interview.
Numbers from the Alzheimer’s Association 2019 Facts and Figures Report
First, can you tell us a little bit about your background? How did you decide to become a geriatric care manager?
When I was 7 years old, my grandmother was diagnosed with young-onset Alzheimer’s disease in her late 50s. When she was diagnosed, no one had really heard of this. She was so young. I watched my grandfather care for her at home. He ended up having a heart attack because he didn’t want to place her in a nursing home and was carrying her from room to room. This was the early 1980s and it was either you take care of people at home or you put them in a nursing home. Those were the only choices.
My grandfather eventually ended up placing my grandmother in a nursing home. As a young person, watching this experience was horrifying, and I thought, there’s got to be a better option.
When I was in college, I sought out an internship at the Alzheimer’s Association of Eastern Massachusetts. That really got me interested and involved in the field. From there, I ended up working in an assisted living facility in memory care, then I worked with Hearthstone Memory Care, and then decided to go back to graduate school and get my doctorate.
While I was there, I learned about the field of care management and was really excited about the idea of being able to follow people with cognitive impairment through the different stages of life and through the different stages of care, whether that was at home or in a facility, and helping them navigate how to deal with a hospitalization or other things that come up.
You have your own geriatric care management practice. Can you tell me a little bit about what GCMs do? What kinds of situations do they help with?
“A care manager can be a valuable resource in problem-solving, trouble-shooting and strategizing.”
Care management is a big concept. If I were to sum it up, I would say that care managers are consultants that work with families who are facing some real challenge(s) around aging, like Alzheimer’s & dementia, mental health issues, resistance to care, or not being clear about what services or facilities are available and/or appropriate. Families typically come to us when there’s some pressing issue that they’re dealing with and need guidance around how to handle. A care manager can be a valuable resource in problem-solving, trouble-shooting and strategizing.
As an example, I had a client who was caring for her husband at home and was really unsure whether she should add on care at home or consider placement. I evaluated what she currently had in place for homecare and we decided a day program would be helpful for socialization. I helped her choose and set up a day program. I continued to consult with her about the homecare she was using: how to match a good caregiver for her husband (it was tricky), how to know when to increase care, and how to strategically schedule care during the day so she could give herself some respite. We worked together for a year before she decided to place him in an assisted living facility when his care became too difficult at home. She probably would have decided on placement much earlier if I hadn’t helped her strategize around how to make home-based care less stressful.
What advice do you have for families who are trying to decide whether or not to hire a GCM?
It’s important to interview a GCM you are considering hiring to understand how he/she can be helpful to you. What you need to do as a family is say, “here’s what our needs are” and ask that care manager what their strategy would be for addressing them. Where do they think they would be helpful? I would advocate for interviewing more than one care manager, because different care managers have different styles and different processes for solving problems. You want to find the person that you feel is really going to help you solve your particular problem.
I would imagine that you often enter situations with family dynamics that are complicated or fragile. How do you build trust in these situations?
When you have families who disagree about their loved ones’ care, everyone’s fears and desires have to be heard and taken into account. It’s also important to learn as much background information you can about the situation. For me as a care manager, it’s about listening and asking pertinent questions that can lead to better understanding. The care manager should also remain focused on the client’s best interest and explain to the family why you think a certain recommendation is important.
“Everyone’s fears and desires have to be heard and taken into account.”
You told us earlier that your grandmother had young-onset dementia, which inspired you to focus on atypical and young onset dementias in your work. Can you explain what these terms mean?
Atypical dementia is any dementia that isn’t Alzheimer’s disease. As we know, dementia is an umbrella term that describes a collection of symptoms that often includes memory loss, but can also include judgement impairment, loss of impulse control, personality changes, and loss of executive function. While Alzheimer’s disease is the most common of the dementias, there are lots of others that are called atypical dementias, including frontotemporal dementia (FTD), Lewy Body dementia, and vascular dementia.
Young onset refers to anyone who is diagnosed with a cognitive impairment prior to age 65. There isn’t any clinical reason for that designation, but it is a way researchers think about a younger person having the disease as opposed to someone in their 80s and 90s. There are some parts of younger onset that have a clear genetic component, whereas it’s not clear whether the later onset has a genetic component. I often have clients that are in their 30s, 40s, 50s, and early 60s with cognitive impairment, which, as you can imagine, presents some serious challenges that don’t exist for older folks with the disease.
Can you tell me about some of those challenges associated with young onset dementia that don’t exist for older people with the disease?
For younger people who have been diagnosed, their symptoms may be most obvious at work. It’s often co-workers who notice these initial symptoms first, sometimes even before the families. So, often, these people have been asked to leave their jobs or have had to resign. It’s difficult because these individuals have been in the prime of their earning potential, and that can put a huge burden on their families. It has a financial impact, as well as an emotional impact. As a younger person, that’s where you expect yourself to be — at work. You don’t expect yourself to be retired, or sitting at home. It creates a vacuum as far as what the person spends their time doing.
When an older person has dementia, their caregiver has a peer group they can lean on for support — other caregivers who are going through or have gone through this before. Whereas for a younger person in their 40s or 50s who is caregiving for their spouse, it’s very difficult for them to find a group of peers for support who have experienced the same thing, so they often feel very isolated. That can be true of the children of the person with cognitive impairment, as well. Because these people are young, they may have young children, teenage children, or college-age children. These children are also experiencing this, so it’s difficult for the entire family.
“It’s really difficult to apply services that were designed for older people to fit a younger population. It’s like trying to fit a square peg in a round hole.”
The last big challenge is that all of the available services for individuals with cognitive impairment are designed for older people. It’s really difficult to apply services that were designed for older people to fit a younger population. It’s like trying to fit a square peg in a round hole. We are finding a real lack of resources for younger people with cognitive impairment, so we often have to manipulate services to fit. The programming and services just aren’t appropriate. We’re sending our younger clients into these programs or facilities where they’re surrounded by people in their 80s and 90s. Often, I’m in the position of advising facilities about putting in things like vigorous exercise programs that wouldn’t be put in place for an 80 or 90 year old.
How are atypical dementias different from Alzheimer’s disease?
Often, atypical dementias have difficulties associated with them that are not present in Alzheimer’s disease or can be present in Alzheimer’s disease, but aren’t the primary features. With Alzheimer’s disease, often the first thing people notice is personality change or memory loss. With some of these less typical dementias, sometimes what we’re seeing is personality change for sure, but then also changes in judgement and/or impulse control first as the primary symptoms, and then memory loss coming later as a secondary problem.
There are also some atypical dementias that have a lot of symptoms dealing with language. For example, word-finding can be a problem, or trying to say a word and having it come out like nonsense, or saying the wrong word (so when you mean to say “pencil,” you say “hammer”). Diseases like primary progressive aphasia or posterior cortical atrophy, which are 2 of the atypical dementias, often have a language component. There are also different variants of FTD that can have a language base as opposed to a behavioral base.
You are the president of the New England chapter of the Aging Life Care Association (ALCA). What is ALCA? What are the benefits of ALCA for clients and professionals?
The Aging Life Care Association (ALCA) is the national trade association for geriatric care managers. We make sure members have a certain level of experience and training to join. In order to be a member, you have to go through a vetting process and also pass a competency test that shows that you have general information and knowledge about different resources, insurance, and the system of elder care. That’s one of the main functions of the association: to certify folks in care management and say to the world, “this is a good person for you to hire because they have the skills to provide care management.”
It’s also an association that provides education for care managers. There’s an annual conference and different regional chapters that provide education and support for care managers. There are some care managers who are sole practitioners or work in small practices, so having a larger organization to give them support, peer supervision, clinical oversight and education is really important.
If you’re a family member looking to hire a care manager, it’s important that the person is a member of the Aging Life Care Association. There is a search function on the national website. If you’re looking for someone in a particular geographic area, you can search by zip code or town. If you want to see if someone you’ve heard of is part of the association, you can search by name. It’s a consumer protection knowing that you’re getting someone who has the experience and the knowledge you need to guide you through these decisions.
We know that families today tend to be geographically spread, but much of GCMs’ work is very locally-based. How do you balance this in your work as a GCM?
You have to set up a really good communication system, and decide whether communication will primarily be via conference call or email. We’ve been utilizing video chat more and more. It helps families feel present even when they’re not physically there. It helps them to see the faces and the expressions of other family members and of the care manager.
It’s also important to divide up roles so that everybody has some involvement. We might have a family member at a distance take on a role that can be done electronically or virtually, like managing finances, so they can have some involvement in the care of their parent that doesn’t require them to be present. It also takes some of the burden off of local family, if there is any, who may be doing the hands-on stuff.
I have cases of elders who don’t have any local family. It’s always difficult when there’s family at a distance, but I think, in these cases, it’s even more important to give families a lot of information about your observations and to hear what their concerns and desires are. I give them the information they need so they can make informed decisions on behalf of their parent.
The numbers are staggering. It is projected that 14 million Americans will have Alzheimer’s disease by 2050. What is your vision for how our society will accommodate this growth in the (not so distant) future?
I try not to pay attention to predictions around the research because they’ve been around for a long time and are very discouraging. I like to think about what we can do in the individual’s environment to help make their lives better in living with the illness and making the lives of their caregivers better.
Purposeful, meaningful activity is so important for people with dementia, even well into the progression of the illness. Yet, there isn’t a lot of opportunity for that kind of activity. I’m not talking about Bingo or just staying busy. I’m talking about real meaningful engagement. People with dementia make great volunteers, but there’s a lot of fear on the part of places that accept volunteers. I would love to see community programs that put folks with dementia to work as volunteers and find ways for them to be productive members of society, even if they need support in doing that. It would be meaningful for the person with cognitive impairment, but it would also provide respite for caregivers and be valuable for organizations searching for volunteers.
We need to become more open to having people with Alzheimer’s and dementia be part of our larger community. I see a lot of isolation in the families that I work with, not just for the person with dementia, but also for the caregiver. Caregivers are often reluctant to engage in social interactions, which are imperative to their well-being, because they’re so concerned that their family member may be shunned socially or that it may make other people uncomfortable. We’ve come a long way with reducing stigmatization of Alzheimer’s and dementia, but we still have a long way to go in terms of learning how to communicate and socialize with people who have this illness.
“We’ve come a long way with reducing stigmatization of Alzheimer’s and dementia, but we still have a long way to go”
