Welcome to Memory Care Support’s
March 2016 newsletter!
See Me, Ask Me, Include Me...
I recently attended a Memory Care Conference and came away with good ideas and new friends. A wide spectrum of viewpoints were represented-- family members, Memory Care Operators, nurses, activity specialists, investors and marketing professionals.
There was one viewpoint that wasn't heard enough though, and I think it's the most important... we didn't hear from anyone personally living with dementia...
How easy is it to assume that everyone diagnosed with dementia is immediately incapable and can't contribute. To the contrary, these are the very people we need to include and listen to and learn from!
It is stigmatizing to be diagnosed with Alzheimer's or other dementia, and one of the common experiences is the social isolation that may follow the diagnosis. At a recent support group I attended, one woman cried as she described the loss of contact with her longtime friends. The loss of contact wasn't because she desired it, but rather because her friends shut her out. She described how one of her friends said, "We'll miss you in our book club, but we don't want to put stress on you by expecting you to keep up with the reading. There's no point in you trying to attend now that you have Alzheimer's." She continued to cry as she listed other connections with friends that had just as quickly evaporated. She wasn't called anymore to go for walks, go to the movies, or even chat on the phone. She put it very poignantly, "Do they think I don't enjoy walks anymore, or talking with my friends? It hurts so much..."
Some of her friends may have felt uncomfortable, not knowing how to react or what to say to the news of her diagnosis. I've heard other people describe their discomfort when suddenly a friend is given a life-threatening diagnosis. One woman said she didn't want to "intrude" so just stopped calling her friend who had end-stage breast cancer. But wasn't the woman thinking of her own discomfort rather than the needs of her friend?
In a survey involving hundreds of people living with dementia in Australia, over half said they felt people avoided spending time with them after their diagnosis.
The quote "Nothing about me without me" has become a rallying cry for many people demanding equal partnership with the healthcare world. People living with various disabilities remind us to include them in decision making. People living with dementia have that same hope.
The vast majority of the public automatically assumes that a diagnosis of dementia would make a person incapable in all aspects of life. As professionals working as advocates for people living with dementia, let's be sure we help to change the public's misconception. As we learn to provide even better life-affirming care for those living with dementia, let's guarantee we don't discount the knowledge and heart of those very people we want to support. I was talking with a colleague this week about this misconception that people diagnosed with any type of dementia can't contribute. How could we, as professionals learn how to provide better life-affirming support? Why not go directly to the people affected and ask their opinions? What if..
- The Senior Housing Industry would hold a forum during which people living with dementia tour residential care locations such as Assisted Living Communities and Nursing Homes and share their ideas of what they would like to see? If they could design their own residential environment, what would it look like? What would be the essentials "must haves" for engagements, staffing, training? What are we missing? What do we need to change?
- Hold similar forums for in-home care and hospice organizations. People living with dementia would tell us what the elements of good care from home companions and hospice teams would look like. What are we missing? What do we need to change?
If we had these types of brainstorming forums, we might not like everything we hear, but we could learn a lot! I refer us all to this recent blog on the DAA website.
Dementia Action Alliance by Brian LeBlanc. Brian has Alzheimer's disease and shares very clearly about his feeling of isolation and abandonment by his friends since his diagnosis. Listen up!
Have a great day!
If you work in Assisted Living and want
To make your dementia care program even better,
Or if you need assistance in
Planning care for a loved one,
E-mail or call me for a free consultation.
Anne Ellett, N.P., M.S.N.
AANC Certified Gerontological Nurse
Founder, Executive Director - Memory Care Support
Ph. 949 933-6201