Dementia is a Disability – an important side note

This article by me was published in 2017 on Holly Russo’s Wavian Arts blog.  I came across it recently and thought I would share it here, on my own website.  Although I mostly deal specifically with pain, many pain patients are concurrently dealing with behavioral health issues and major life transitions, not just because these are often precipitating and perpetuating factors of pain, but simply because all people have this stuff at one time or another in their lives.  My own mother passed after eight years of us caring for her with dementia.  That experience profoundly affected my understanding and my ability to be of service to those caring for those with, and also those experiencing, dementia.


I was hunting for a good basic dementia information site to share – they are legion; pick one – and I was struck by this meme from The Alzheimers Reading Room:

Around one half of respondents agreed:
As soon as someone is diagnosed with dementia,
they are no longer treated like a thinking human being.

Since my dad died almost four years ago, our attention has turned to caring for my mom, and this statement has proven heartbreakingly true.

I have been lucky enough to have a family member who is trained in teaching children, families and professional caregivers about the social needs of dementia patients to clue me in. She has been able to explain what’s going on with our mother’s mind, and what she can and can not do with it. Details have been quite specific about what kind of support my mother needs from her caregivers, family and community.

While these needs and how to meet them seem obvious once explained, I notice again and again how even the most dedicated and compassionate doctors, caregivers and friends are unaware of how to be with, and support or assist patients and loved ones living with dementia.

This dismaying gap in public awareness of how to accommodate what is essentially a common disability – one in six women and one in ten men over the age of 55 will get it – needs to be closed.

Over the last three decades, as our society developed an awareness that Americans with disabilities have a right to be accommodated, we moved to install ramps, handrails, wider doorways, and beeping crosswalk signals, provide telephone and on-line services for vision- and hearing-impaired individuals, and pass laws guaranteeing access to public places for service animals.

We have also figured out that when we see our fellows who once were kept hidden from society – persons with developmental delays or intellectual disabilities – that we see them as people, treat them with respect, make the allowances they require and value them for their contributions and membership in our society.

Over the last three years I have taken my mother to many doctor’s appointments, sat with her during three emergency room intakes and two hospital stays, and seen her in the care of countless “memory care” caregivers. (Quotes because in the UK “memory care” refers to a pretty complex understanding of how to effectively engage with someone with dementia, whereas in the US it more often refers to a locked-down facility for Alzheimers patients, with at best only a passing nod to dementia-appropriate activities.)

It took us a couple of years to figure this out, unfortunately. What often happens is a doctor or nurse walks in, talking fast, firing questions or telling us what they are about to do. Sometimes they address my mom, sometimes they don’t, assuming it’s pointless.

Either way she is confused by what is going on and she can not understand what they are saying.

It’s disrespectful to her, and frightening for her.

I break in at this point and tactfully offer them a one minute crash course in communicating with dementia patients.

I explain, while demonstrating, that if you take my mother’s hands in yours, look her in the eye, and speak clearly and distinctly, that she can actually understand everything.

She usually proves my point at this moment by responding with a reasonable and intelligent reply. The looks of surprise (It speaks!) are gratifying. The neurological ward nurses were delighted with this trick. Despite having hundreds of elderly patients with dementia in their care, this one little essential thing had never been included in any of their training.

One’s identity is what makes a person herself.

Think about what makes you yourself for a moment: your memories, your community, the creative work you do, being needed and useful, your home, what music you love, your faith.

Caring about someone who has dementia is heartbreaking and infuriating as the stuff you like doing together and your usual ways of relating to them stop working well.

Your friend has become a different person.

But for your friend, they have not ceased to be themselves inside.

For them, these changes are terrifying and profoundly depressing as bits of identity blink on and off and eventually don’t blink back on again.

They have a disability that makes it hard for them to go where they want, do what they want, organize, make phone calls, use electronics, remember names or words, separate past from present, ask for help, hear, see.

Their essential self is still in there, but they can no longer make the first move.

What they need most is help staying connected to their identity; they can no longer reach out, so we must reach in and help them.

This is when they need their community to stand by them and show them they are still wanted, needed, useful, interesting, loved, a valued member.

This is what needs to enter the public awareness. 

If you have had someone close to you with dementia, you already know.

If you realize that you have a friend who is getting dementia, help them stay connected to their community and to themselves because their increasing difficulty doing this for themselves is a disability that needs its own kind of access ramp.

We need to spread the word.

My mother’s mind is still in there, it’s just ensnared in the plaques and tangles.

If she seems muddled and I miss my mom, I only have to tell her my troubles and there she is, offering sympathy and comfort. If she is confused in the modern world, I read her James Herriot stories, full of 1930s English farms and countryside, and she becomes oriented within a world that makes sense. If she complains that the caregivers are being beastly to her, I ask her if she means the nuns at St. Audrie’s, and she says, “Yes!”, as though I wasn’t keeping up and have asked a silly question.

Please help spread the word so we can increase awareness and compassion. No one is ever too far gone to be treated with grace and humanity.