In researching person-centered care and its impact on both staff and residents with dementia, I followed the source to Dementia Care Australia. It is a look into what I hope to one day develop. The focus on facilitating culture change in facilities through training, presentations, and even products is refreshing. Check out the program, Spark of Life. It’s based in solid best practice.
He came to us through the labyrinth of university closed doors. Ninety-two years old, Jesse G. wanted to develop a cognitive brain program. He landed on Dr. E’s desk because she has a big heart and hoped to gain future goodwill for research in the assisted living arena. He was a successful business man with a passion to get his peers out of their depression and back into life. By the time our research team met with him, he had formulated an entire program of reminiscence as well as a battery of tests to assess its value. He envisioned starting with 500, we suggested 14.
What we as university representatives had to offer was not what he needed. Our volumes of regulation and preliminary review process would take too long for Jesse. He expressed the desire and need to leave a legacy.
We were able to offer a few student volunteers and a few speakers for his twelve session program: Count Your Blessings, Not Your Toes. He took our advice in protecting the identification of his participants as well as including a geropsych nurse. This last was to address any of the fallout that we as academics feared would happen in an unmonitored life review process. Our volunteers helped him apply several standard assessments of cognition, depression, and stress prior to the start of the program.
It was a worrisome day when I met him to share that the university would not be able to conduct research with the project. But I was able to express the enthusiasm the project deserved and promise what support we could offer. We left the meeting as successful politicians, shaking hands all around.
The project was almost forgotten, when I received an email requesting that I cover a week of the program. I was honored to present my psychosocial workshop, Feathering Your Nest on the sixth week. This was the week Jesse returned from the hospital after missing week five due to a heart attack. He was less vital, a bit fuzzy, but still in charge. In the meantime he had recruited key leaders in the Assisted Living to assist as well as applied for a large community grant. He was still dreaming of taking it national. For an hour and a half I had the interactive energy of 14 seniors in the assisted living. Jesse was beaming with the success of the program. Our student volunteers reported similar results for all the weeks to date.
Jesse and the project slipped from my mind again. One of the students told me when it had wrapped up.
Then this week she stopped in with his final report. His Healthy Brain Initiative Wrap-Up for Count Your Blessings, Not Your Toes. Every one of his assessments showed huge improvement post-program!
And she told me, Jesse is in the hospital and not expected to come home . . .
Legacy–he did it. He has successfully launched a boat that may indeed go nation-wide. Regardless, he knew what he wanted to pass on, and he took the action to get it done. Successful businessman, successful individual.
For us—Jesse opened up our worlds to the real side of Gerontology–the aging side. Hands on action. The data may be flawed, the sample skewed, the results not publishable in a peer-reviewed article. But the peers that mattered were touched. A legacy will be carried forth. Fourteen people were blessed, and the circle of influence spreads out to each of us who had a part in Count Your Blessings.
Hats off to Jesse G.—-an example of imminent action and the value of legacy. A blessing to all of his peers.
The Pioneer Network is a stakeholder coalition formed in the 80’s by a group of ombudsman in New York. Their funding was from a astute money manager and dairy farm owner, Daisy Marquis. Her foundation funded the group of medical model stakeholders who continue today to fight for Culture Change in nursing home care. They are an organization committed to marrying the social model with the medical model to provide optimal care. Care that meets not just physical needs but psychosocial needs as well. A group committed to autonomy and health. Check out their website: pioneernetwork.net. Their DC conference is scheduled for August It’s steep price may limit attendance to true stakeholders but the web site has in-depth information on many significant projects and commitments.
Autonomy and Health
The fine balance necessary between these two standards is never clearer than in the recent Florida death of an 86 year old female resident of an assisted living facility. She signed herself out, went to a local grocery store and then drove off of a boat ramp. She was found seven days later drowned. The media and community reaction varied. It ranged from suicide being her goal, to memory loss and directional impairment, to “the right to die” her way. Had she been residing in a nursing home, she would probably not have had the autonomy to check herself out and drive away. However she would have had a regular assessment of depression—in the case of suicide; and cognitive decline in the case of memory loss and directional impairment.
Assisted living residents tend to be healthier and have more financial resource. Autonomy comes at a high price. There is no requirement for a quarterly review of the resident’s adjustment, changing conditions, or health plan. The “social model” is assisted living’s theoretical foundation. The environment is often more home-like and less restrictive. The resident is expected to do more activities on their own; there is less structured provision of leisure pursuit. Some offer advanced care options that provide more of the medical oversight that is needed as senescence and chronic disease takes place. Others do not.
On the opposite side is nursing home care, the “medical model.” This has traditionally been institutional in décor, in schedule and in care. Federal regulations mandate attention to medical and psychosocial health. This includes inter-disciplinary care plans quarterly or as needed for significant change. Autonomy is often undercut by medical oversight. Efforts to lessen the institutional nature have come far, but there is still far to go.
Wouldn’t a perfect healthcare setting offer both autonomy and good health? Shouldn’t Medicaid and Medicare be willing to cover the provision of this ideal setting? There are a few spots where this is true: senior care centers embracing the Eden Alternative; long-term care residences offering Dementia Special Care Units; the Dementia Care Foundation in Minnesota. The provision of both is rare. Yet they provide the optimal marriage of senior care: Autonomy and Health. Mary Zelter may still be here had she had medical oversight along with social autonomy. Her death is the opportunity to take a more critical look at valuable senior care.
An analogy of Alzheimer’s disease could be one of a forest being taken over by undergrowth. The clear paths that once existed neuron to neuron are being overtaken by plagues and tangles that make the cognitive journey difficult. When the thoughts are no longer connecting to guarantee recognition of loved ones and tasks of daily living, more care providers are added. These are folks who don’t know the individual at all but hopefully understand the disease and its impact. How do they get to know the “resident”, “patient”, or “client”? They need a trail of breadcrumbs through the undergrowth.
That’s where family and social histories are invaluable. When my father-in-law entered the nursing home, I wrote a simple one-page letter to the caregivers that we posted above his nightstand. It gave them a few trails to pursue when they interacted with him. Most of all, it gave every caregiver an understanding of Dad as an individual. A father of ten, grandfather of 35, a bomber pilot in WW II, an engineer and electronic tinker—a man whose behaviors were not a reflection of his personality or his past, but of his disease. As a family we were comforted by the knowledge that we had a presence in his care even in the middle of the night or early morning when we were not there.
As a recreation therapist, I sought such information from families and caregivers. Each resident chart in the nursing home and in the assisted living had some reference to a Social History Assessment, but rarely was it complete. It was buried in the Social Work section or in the recreation department’s files, not accessible to the day-to-day hands-on caregivers. Little has been researched about the value of this form that is so often neglected. But much is written about person-centered, relationship-centered, and integrity-promoting care. It’s only the breadcrumbs through the forest that really provide the clues to offer such individualized care.
Pralines. An excellent example. When I started on the Dementia Special Care Unit, one of the residents was not engaging in activities. She was either asleep or wandering. The winning clue that helped me establish a relationship with her was her Louisiana childhood. Mention of Louisiana would wake her, bring a smile and a hand outreached to me. As I utilized this breadcrumb, more engagement came. Prey-lines—I said one day—with a northern twist. She verbally corrected me—Prah-lines. As she said it, her posture adjusted to show just how important this nuance was to a lady from Louisiana. These breadcrumbs allowed us a connection and engaged her at a level not seen for over a year.
Neshume-le. She was a resident of a board and care home in her later stages of Alzheimer’s disease. She had a hanky that she would repeatedly use in a maternal cat bath to herself and to those close to her. Engaging her in recreation that involved folks still cooking, playing, singing was a challenge. But I would engage her by sitting or standing close and maintaining physical touch. She would use her hanky and call me “neshume-le”. The home’s owner had no idea what it meant, there was no family. But I responded to this breadcrumb intuitively. I encouraged the provider to allow her to have a baby doll to mother. Years later I read the meaning of the word, “little precious soul.” Such a gift she was giving me! We had walked the breadcrumb path each week, based on very few clues.
Notre Dame. He came as a leader in his late middle stage of Alzheimer’s. He was an organizer of residents, he would stand beside me in a group, helping. His peers were not always happy with his leadership. The social worker gave me the clue—he had been a football player for Notre Dame. After than, any conversation about the team, his role, the historic run—-would bring cooperation, a sparkling smile with eye contact, a relaxation of his posture. Our connection worked so well that I was often his caregiver in personal care when he was resistant to his aide.
There was a very overgrown forest in each of these instances. Some of the response was probably based on indefinable connections made. But it was the history that gave caregivers the clues to navigate through the woods.
Breadcrumbs. Perishable and seemingly unsubstantial—yet enough to lead one through the forest.
Person-centered care requires history sharing.
My qualifications as a dementia recreation specialist come from over twenty-six years of care-ing for individuals with dementia. I started as a nurse’s aide in 1972, continued as a volunteer when my children were very young and then had the life-changing transition from professional caregiver to family caregiver of my father-in-law with Alzheimer’s disease. My ability to provide nursing assistance was very useful as a live-in caregiver, but our inability to provide him with better quality of life was devastating. After his death, I took on a job as activities assistant at the Adult Day Care Dad had attended briefly. I learned how to couple my intuitive care instincts with my creativity to provide therapeutic recreation to individuals with a wide range of experience. I became a good activities assistant whose best skill was with individuals with dementia. Coupling my Winter Growth training with certification as an Activities Director led me into LTC and then private consulting and recreation provision.
Although I consider myself a Recreation Therapist, my certification is not of the CTRS variety. That would have called for a second Bachelor’s much later in life. The advantage to being a Certified Activities Director is that my recreation training is elder-focused. The rub is that though I feel very much like a recreation therapist, I’m not officially certified as one. So what to call myself?
My first role as a Memory Unit Birthing partner has given me a new label. I sent off my full recreation recommendations to Weinberg Village, the soon-to-be parents of a memory unit. My joy in preparing it was a great counter-balance to my research as a Doctoral Candidate. As a part of the consulting team, my role was non-medical and centered on therapeutic provision of physical, emotional and individualized choice in, middle and late stages of the disease.
This mirrors Wikipedia’s definition of a doula. Historically a doula is an experienced mother who assists new mothers. The doula title works well with experienced Alzheimer’s caregivers who assist new caregivers. The doula definition works as a member of a team whose goals are very consistent with those of a dementia special care recreation therapist.
The Doulas of North America give a description of the duties of a doula that was easily adapted to include dementia recreation specialists.
A Dementia Doula:
o Recognizes dementia as a life experience that the family will remember after their loved one is gone
o Understands the progression of dementia(s) and the emotional needs
o Assists the individual and their family in preparing for and carrying out their plans for life and death
o Stays by the side of the individual throughout the course of their dementia
o Provides emotional support, physical comfort measures, an objective viewpoint and assistance to traverse the changes brought by the disease
o Facilitates communication between the individual with dementia, their peers, their family and professional caregivers
o Perceives her/his role as one who nurtures and protects the individual with dementia’s memory
The dementia doula recognizes the life in the experience of the individual with dementia. The doula captures what memories, plans, and preferences remain despite the disease’s damage. Side by side and hand in hand, the Dementia Doula brings the insight and energy to the often tumultuous aspects of caregiving. As a non-medical member of the team, she/he offers the multi-sensory therapeutic support that facilitates communication with the entire care team: Individual, family and caregivers. The unique contribution of a recreation provider facilitates the nurturance and protection of the individual’s identity and memory.
Weinberg Village is an assisted living facility whose commitment to care conceived the idea of a specialized memory unit to assist their residents progressing through the middle stages of dementia. Their birthing plan may or may not include all of my recreational recommendations, but the invitation to serve as a doula has been an honor and a privilege. I was given the gift of practicing my skills, envisioning the ideal environment for individual quality of life, and translating recreation and dementia care research into practice.
L’Chaim and its experience with dementia.