Activities for family members with dementia

There is a lot of focus on what elders with dementia can’t do. But what about more discussion of what they can do?

When you see a patient with dementia, how do you help family members maintain meaningful interactions with their loved ones? I am sad to admit that I don’t do this nearly as well as I should. After all, this is not the type of thing we are taught in our training.

The recent posting from the wonderful New Old Age Blog in the New York Times, from guest blogger Dr. Cynthia Green, has some useful, practical advice. As she states, “the trick it do find activities that are engaging, yet doable.” The general gist is to find activities and hobbies that the person has enjoyed most of their lives and make modifications so they can still do parts of them. For example, perhaps Grandma loved to cook. Maybe she can’t cook a meal anymore, but mashing the potatoes, icing the cake, or using the cookie cutter may be very meaningful to her and give you something you can do together.

One of the best parts of this posting are the wonderful comments from family members. There is a treasure trove of useful tips and suggestions about what has worked in different situations. Several family members noted that when they stopped mourning what their loved ones could no longer do, and instead learned to find joy in activities they could do together, their stress decreased and they found new meaning in their relationships. I wonder if I would do more good for my patients by just referring them to these snippets of advice than by writing another donepazil or memantine prescription.

The post is making me think about a number of issues in terms of the how we learn to care for patients with dementia, and the dominant research paradigms in the field. We are rather dominated by a model in which the focus is on reversing and/or preventing declines in cognitive function. The problem is that current options, when directed towards that goal, are quite poor. Would management of dementia be improved if the “cure” paradigm were replaced with a quality of life paradigm?

And why is there such limited research into practical approaches such as these towards improving quality of life and well being in persons with dementia? Why don’t we ever see any research examining this type of issue in medically oriented geriatrics and gerontology journals?

This is exactly the kind of area where a geriatrics and palliative care collaboration could improve how we care for patients with dementia. We need a model that more explicitly recognizes dementia as not curable and minimally preventable — something that will be true for at least the intermediate future. At the same time, our model needs to be emphatic that incurable does not mean hopeless, or that there is nothing we can do. The research and clinical model needs a much more explicit focus on quality of life.

Geriatricians need palliative care clinicians and researchers to partner with us in this endeavor. This is a great model for why palliative care needs to be about much more than the last 6 months of life.

Ken Covinsky is Professor of Medicine, University of California, San Francisco who blogs at GeriPal.

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  • Cheryl

    From conversations with my sister-in-law and best friend- different experiences with AD, plus my own experiences with my MOM – pretty good, but some vascular dementia ( I guess) — this is my best advice -don’t be afraid to laugh at your “experiences” with your newly abled elder. It’s OK. We’ve all had folks who tho’t we were horrible to trade stories and laugh — but it keeps us going. It may not seem so funny in writing – but when your efforts to find Mom some new shoes are thwarted by – 1) your 87 yr old mom’s demand for high heels and when you tell her that even you don’t wear them anymore, she says indignantly, “well that’s not my problem!” 2) she says the shoes that fit yesterday are just awful today, and then you find she’s wearing two right shoes, which is apparently what you left the shoe store with after 1 hour getting ready, an hour enroute, an hour there and the return trip to her home, and you live 4 hours away. We take our Moms’ care seriously, but not solemnly (ref to an old Russell Baker column).
    Really, any simple repetitive activity can be fine — and if you are relaxed and happy – usually ( not always) this leads to a happy (or happier)interaction. My MIL did well with simple household activities – e.g. folding towels. My mom likes going into photo albums and sometimes comes up with stories I never heard. My friends mom likes simply riding in the car. Another friend’s MIL rearranged stones in the flower garden. You just let go of setting goals – and pick up on whatever interest they have. And never argue about “facts” – face the fact that you’ve gone down a different rabbit hole.

  • Lisa

    I brought my fiance to “meet the family” and no one told me about my grandma’s (vascular) dementia. She didn’t even recognize who I was and I had lived with her for a while. She was so confused. My mom tells me about the things she does and it seems so unreal…she was such an independent lady. I’m starting to be ok with it, but it’s really hard to see this happen to her.