Daughters, if you’re one of the nearly 15 million Americans who provide unpaid care to a person living with Alzheimer’s disease or another form of dementia, you need to meet Lisa Gwyther, one of the early advocates working to support your journey. She’s founder and director of the Duke Family Support Program and one of the founders of the national Alzheimer’s Association. We had the privilege of interviewing Lisa and learning about her fascinating career.
Lisa, tell us a little about you and the journey that led you to create the first Alzheimer’s family support group and the oldest, continuously publishing Alzheimer’s family caregiver newsletter in the US. I heard you were also recognized as one of the founders of the national Alzheimer’s Association:
I completed my Master’s of Social Work in 1969 and worked initially in family services. I’d been trained in child psychiatry, but by the time I was ready to work I had two babies of my own – and I was working part-time with depressed mothers in a rural community in Connecticut. I wanted my part-time work life to be very different than my home life so on a next move to Ohio, I job shared and helped start a social work program in a non-profit home for the aged. This is when I became really interested in working with older people and their families. Later, I developed advocacy programs for older people during the war on poverty and taught social work in aging in an undergraduate social work program.
When relocating to North Carolina, I knew the Duke Center for Aging was one of the most prominent federally funded research Centers for Aging. I naively decided , “I want to work there”. I somehow managed to sell myself to the director of Duke’s Aging Center, initially as a a part-time data tech. After about nine months, I learned that the Duke Hospital Auxillary was interested in seeding a support initiative for the families of older patients at Duke Hospital. I was convinced that one of the biggest issues the family members were facing was how to respond to the confusion and memory loss of an older relative, which, at the time, was thought to be a ‘normal’ part of aging. I had the honor of teaming up with a prominent Duke neurologist who was leading the first federally funded epidemiologic study of younger-onset Alzheimer’s disease. He introduced me to two women in Minnesota who were trying to encourage a national organization for families of people dealing with Alzheimer’s disease. We used the Duke Hospital Auxillary grant to start the first support group for people dealing with Alzheimer’s at Duke in 1980.
How often did the first support group meet and how did The Caregiver newsletter come into existence?
The first support group met once a month at night and people would drive across North Carolina to attend. They would stay late, unsure they could return. They quickly identified the need to talk to each other outside of the group, but this was before the Internet and long distance calls were prohibitively expensive. We encouraged families to write one another letters that we published in a newsletter. It was mailed out by Duke five to six times a year and the original support group families chose the title, The Caregiver. At one point, The Caregiver was being mailed to 11,000 people in the U.S. and nine countries. It’s now considered the oldest, continuously publishing newsletter in the US and it is sent via snail mail twice a year to about 400 people and electronically to many more. We also have a monthly electronic newsletter available called, Triangle Area Monthly E-News. You can find all archived editions here.
We encouraged families to write one another letters that we published in a newsletter. It was mailed out by Duke five to six times a year and the original support group families chose the title, The Caregiver.
The Duke Family Support Program has been in existence for 38 years now. Tell us about the services you provide and how you’ve kept the program funded all these years.
We’re a non-profit organization that relies on funding from foundation grants, research grants and service and consulting contracts. In the late 90’s, I was on an all-university committee focused on work/family life issues.. The committee encouraged Duke Human Resources to provide pilot funding for me and another social worker in our program to develop an employee elder care consultation service. Duke had employee survey data suggesting that there were more employees concerned about elder care than there were about finding child day care facilities. Since then we’ve had a year-to-year contract with Duke Human Resources to offer employee elder care consultations to any of the 34,000 Duke employees in the Triangle area. We also offer four support groups that are open to the community at large, including Duke employees.
Duke had employee survey data suggesting that there were more employees concerned about elder care than there were about finding child day care facilities.
Our two longest running funding sources have been both state and federal grants. Since 1984, we’ve had annual state funded contracts with the NC Division of Aging to be a first responder, gateway or clearing house for any one with questions about memory disorders including family members, people experiencing memory disorders and/or professionals providing services.
Since 1985, Duke’s Family Support Program has been affiliated with Duke’s Bryan Alzheimer’s Disease Research Center. Our Program role was offering education services for the research center. For 25 years, Duke’s Alzheimer’s Center held an annual conference for families and professionals with the latest updates on research and care. The conference was unique because it combined health and social service professionals with family members offering all the same information at a lay language level.
Are there employee programs similar to the one you’ve put in place available in other states?
There are other programs offering specialized elder care employee assistance nationally, but there’s probably nothing exactly like ours. We had a world-class aging center and two social workers with years of experience in aging services as the basis of our program. We knew that employees aren’t always prepared for every elder care issues and often there’s a crisis that requires the family to make a decision. At this point in time, people go online and they’re overwhelmed with too much information – none of which may be relevant to their situation – and they may not have enough time to think through alternatives. We started offering a consultation to an employee and any other relevant family members to answer their specific questions. It’s not a counseling, therapy or ongoing care management program. It’s free, confidential and very simple. There’s no established assessment form or reimbursement red tape. The employee makes an appointment around their work schedule and decides whom they want there and we provide either a phone, conference call or in-person consultation. Our objective is to do our best to make it work for the employee who’s trying to keep his or her job.
Have you found any common questions or general themes in your consultations over the years?
Yes. We actually started keeping track of the most common questions or general themes and they almost always include these three:
1. Suspicion of a change in cognitive function or behavior of the older person.
2. A need for an older person to move closer to family or into a residential care facility.
3. Family conflict around the best course of action for an older relative
Our elder care consultation service is not memory disorder-specific, but 80-90% of what we address is related to cognitive decline issues. I think cognitive impairment is an overlay to other chronic conditions that changes everything. People’s normal ways of dealing with acute and chronic illness have to change as a result of having somebody who has a progressive decline in thinking and memory. When people reach the age of greatest risk for dementia, they often have many other complex chronic illnesses,acute events, and family commitments but that overlay of reduced capacity to problem solve, remember and respond to rational explanations or follow directions is what makes it so difficult for families.
Tell me about your ‘Daughters Concerned for Aging Relatives’ group:
The group started in the ‘90’s in response to talking to daughters in the evening Alzheimer’s group and daughters requesting elder care consultations. They wanted a place to talk just with other women caring for parents or older relatives. Originally, because the group has always met at lunchtime near our offices, which are hard to find within a big hospital complex, it was assumed it would be Duke employee daughters, but it never was. It is still open to the community and people come from across the Triangle because it is relatively unique. The group is not specific to memory issues so the daughters named the group, “Daughters Concerned for Aging Relatives”. We get daughters, daughters-in-law and granddaughters. People come in and out of the group. I think the important thing about the group is that it’s there once a month if and when daughters can get there. Some come regularly for a while and then come back two years later. Others have been in and out of the group for a long period because they have responsibility for different relatives over time – almost like a career in family care. They also use it as a jumping off place to get good consumer information and make connections with other daughters in similar situations. Unlike other groups, this group is led by Bobbi Matchar, MSW, a social worker. The daughters have always resisted outside speakers, students, observers or media. Their time is limited and they’d rather spend it asking other women everything they need to know. The daughters have always struck me as very wise, middle-aged problem solvers who don’t have a lot time, are juggling a lot of stuff and some can’t understand why they burst into tears as soon as they get in the room. The only props Bobbi uses for this room is a box of tissues and chocolate kisses. Not everyone cries, for sure, but many feel overwhelmed. Most of all it’s a problem solving, consumer information session.
The daughters have always struck me as very wise, middle-aged problem solvers who don’t have a lot time, are juggling a lot of stuff and some can’t understand why they burst into tears as soon as they get in the room.
Have you had to step into the role of caregiver in your family?
Yes. I’ve had this in my family. I wrote a book for the national Alzheimer’s Association in 1985 explaining to nursing home staff how to care for people with dementia. In that book, some of the examples I use were from experiences I had with my grandmother who had late onset dementia. She didn’t live near me, but I saw my parents care for her and I saw her live through the experience of moving to and dying in a nursing home. The thing is – when it’s personal – it’s totally different. No amount of professional education prepares you for the personal experience of having a family member who’s ill or dying or has a progressive illness. I felt helpless and relied on the professionals around me and other family members.
Thank you, Lisa for sharing your story and committing your life’s work to supporting family caregivers. To learn more about the Duke Family Support Program including the Daughters Concerned About Aging Parents group and a wealth of suggested resources – visit www.dukefamilysupport.org and follow them on Facebook. To learn more about Lisa and her work including 123 articles, book chapters and books, documentary films and awards – visit www.secondopinion-tv.org/panelist/lisa-p-gwyther-msw.