I attended the MA/NH Alzheimer’s Association “Map Through the Maze: Conference for Professionals” this past Wednesday, 5/21. It was one of the hardest things I’ve done since my mom passed away from Frontotemporal Degeneration almost six years ago. The event was held in Marlboro, MA, where I worked as a professional user-experience design consultant just before mom’s illness – a dementia- made me a displaced person for eighteen months. To those wondering, I did experience trauma triggers – driving there along the familiar route I-495, getting disoriented on the way to the conference hotel, hearing the all-too-familiar dementia-journey details of one of the association’s super-advocates…
I wore a recently handmade-in-Scotland kilted skirt (Fraser-clan tartan) to honor my mom’s memory and raise awareness in the health-professionals community (facility administrators, nurses, social workers, activities directors, CNAs, etc.) about three things: a. the family – it’s presence and function in dementia-care, represents 80% of the care provided, and is largely unpaid and invisible in our culture; b. “the family gene” of dementia is effecting families, including my own; and c. FTD is one of the toughest types of dementia as far as its effects on a family. I gave a bookmark with her image and short bio (as well as the Fraser tartan and badge) to those who noticed or commented on my kilt.
The awareness of myself having more access to dementia-care information than many friends and neighbors in the local/global community calls me to share knowledge I’ve picked up along the journey. Specifically, my training as a pastoral minister in the catholic church calls me to share information that will increase the practice of love for each other, while decreasing the amount of fear around the topic of dementia and people who are living with it.
As a practice of more love and less fear, I share with you 3 take-aways and reminders from the conference which apply immediately to our lives in the present moment.
1. Be aware: People living with dementia can be very high functioning for a very long time. They can participate in family and community life for a very long time. People living with dementia can be as young as in their 30’s, married with young children, or in their 50’s, still working as effective managers at the corporate office or on-site at the grocery-store. That said, with age comes an increased risk for cognitive impairment.
2. Consider yourself an empowered long-term-carer: 80% of Long-Term-Care is happening at home and in the community; only 20% of Long-Term-Care happens in the formal system (hospital, nursing home, hospice, assisted living, etc.). We are all long-term-carers for neighbors and friends at our church, at the garden or golf club, card-game, weekly coffee social, in the isles at the food market.
3. Care with love, not pills: Learn about Habilitation Therapy (Dr. Paul Raia & Joanne Koenig-Coste): Challenging behaviors of dementia can be managed effectively without the use of psychotropic medications (grossly over-prescribed in MA Nursing Homes, the 10th worst state in the U.S.A. for the practice of using anti-psychotic drugs for the purpose of controlling behavior in residents, said Dr. Raia). Habilitation therapy, similar to validation therapy, is a communication technique anyone can use anywhere.
An example Dr. Raia shared in the session involved a man with dementia who says he wants to go roller-skating.
a. validate the person with dementia (never use the word No with a person with dementia); “Sure, we can go roller-skating.”
b. refocus their attention; “Let’s have a sandwich before we go roller-skating.”
c. redirect their behavior: “Let’s go make our sandwiches.”
If you have questions about Alzheimer’s/Dementia for yourself or a friend or family member, visit the Alzheimer’s Association website or call their free 24/7 helpline:
Learn more about FTD at The Association for Frontotemporal Degeneration website.
Moving forward with a listening heart,
vision, inquiry, and action,
Member, North Shore Alzheimer’s Partners, North of Boston, MA