Diversity in Dementialand

Often we look at a group of people and think they’re all the same.

For instance, I say I’m a college professor and people immediately roll their eyes and tell me how self-centered and immature college students are. They tell me they never put down their phones and are ill-prepared for life after school. Does that description fit some of my college students? Absolutely. Does it fit all of them? Nope. (And, to be fair, I’m 40 and have been accused of never putting down my phone. I know 60-year-olds who have been accused of the same offense.)

When I say I’m a gerontologist, people start groaning about old people. They tell me they’re grumpy and closed-minded. I do know plenty of grumpy, closed-minded old people, but I know plenty of grumpy, closed-minded young people as well. And I find many older adults to be pleasant, open to change, and accepting of diversity.

And I find that we make assumptions based on a person’s status as an individual living with dementia. When I ask groups to estimate what percentage of individuals diagnosed with a dementia live in a nursing home, they usually say something in the ballpark of about 80%. In fact, only about 20-30% of individuals with a dementia live in a nursing home at a given time. Many only live at a nursing home for a short time at the end of their journey with dementia.

So where do people with dementia live? They live in the community with their families. They may live alone. They live in retirement communities, assisted livings, and nursing homes. Unfortunately, some are homeless. I know one guy who has dementia who doesn’t have a “rooted” home but rather travels across the country with his wife in an RV. They plan to do so until they can’t do so anymore. And good for them.

Many people with dementia are married to someone of the opposite-sex. Some have a same-sex spouse. (I talked to a woman once who referred to her same-sex partner “Teri” as “he” in her caregiver support group because she questioned what type of response she would receive if the group knew she was gay. Finally, she decided to tell them she was gay. No one cared.) Some have a partner but are not legally married. Many have lost a spouse to death. Some have children, and some don’t.

We think dementia is about old people, and age does increase your dementia risk. However, I know individuals in their 40’s living with dementia. Their families tell me it’s a struggle because people say they don’t “look like they have dementia.” Ummmm….what does someone who has dementia look like?

Some people with dementia work. Many volunteer for various causes. Some have money which provides more options as they need more care. Some are barely scraping by. They may or may not be on Medicare or Medicaid.

They have diverse hobbies. It’s common to have to modify or give up some hobbies as dementia progresses, but I know people with dementia who do woodworking, cycling, step aerobics, bird watching, and crafting. I know a woman with younger-onset Alzheimer’s who identifies her favorite hobby as shoe shopping. Her (somewhat morbid) joke to her husband is that she hopes to live long enough to wear all the shoes she buys.

People with dementia watch all sorts of stuff on TV–sitcoms, soap operas, news, sports…I once went to a support group to speak to caregivers. The daughter of a woman with Alzheimer’s came up to me before I talked to say she’d be leaving early. She had to get home in time to watch The Bachelor with her mom. It was their favorite show. So, yes, people with dementia watch The Bachelor.

You may think these are silly points, and maybe they are. But somehow we forget that people living with dementia are just as diverse as the rest of us.

Sometimes I do it, as well. A couple months ago, I met a person who was transgender and had dementia. (The assisted living she had just moved into was struggling with this for several reasons.) This was the first time I met someone that was transgender and diagnosed with a dementia…that I know of. I know it’s not a rare situation, but it took me a few moments to process. Then I remember thinking to myself, “Why wouldn’t someone who is trans have dementia?”

There are institutions that discriminate based on race, sex, gender identity, sexual orientation, and religion. However, dementia is kind enough to include all of us.

When I say dementia, people picture a drooling old lady sitting at a nursing home staring out the window blankly. I know people with dementia who have that blank stare. I know people at the end of stage of the disease process who are bed bound and unresponsive. They no longer have control of their bladder and bowels. They need assistance with all of their activities of daily living. I also know people who are earlier in the disease process who go for two hour hikes, ride bikes, have engaging conversations, and enjoy an evening at the casino.

I don’t assume that only old, white, straight people get dementia. I don’t assume that people with dementia all like the same music, TV shows, and movies. I don’t assume that they all support Trump–or don’t support Trump. When someone tells me their loved one has dementia, I can’t assume much of anything.

I don’t even assume that they have the same dementia symptoms.

If you’ve met one person with dementia, you’ve met one person with dementia.

Even in Dementialand, we are all unique human beings.



One thought on “Diversity in Dementialand

  1. Our friend, Duck, faded away in a local nursing home. He was an alcoholic and gay. As his Dementia progressed, he didn’t want any of his support groups to visit. We both felt that this was a huge loss. It was his choice, but severely shrank his life down.
    The only thing I ever wanted was not to get fuzzy like my mother did. I am, darn it.


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