“Living with” Dementia Matters

After working in the realm of dementia care for nearly 20 years, I find I am still reminded of the power of the words we select to talk about dementia. If YOU were living with dementia, would you rather be referred to as “a person with dementia” or as “a person living with dementia”?

Personally, I happily make those extra keystrokes (and/or use my breath) to employ that word, “living” as often as possible, in this context. Dementia shouldn’t define a person, nor should any disability. Was Stephen Hawking defined by ALS, the disease he lived with? (Amyotrophic lateral sclerosis is a frontotemporal disorder and can include symptoms of dementia along with motor neuron disease.) NO, he was not! Mr. Hawking’s enduring legacy of brilliance, passionate inquiry and wry humor burns much brighter than the name or classification of the disease with which he LIVED for many years. Did metastatic melanoma define my late husband, a comic genius and consummate actor, in those last 2 years of life in which he lived with cancer? Certainly not! (And trust me, I’m not the only one who would say that!)

The point is, we DO keep LIVING, as long as we do, in spite of whatever is going on in our bodies and/or our brains. Quality of life, however, can become a big issue if others give up on us and/or if we give up on ourselves. Whatever our diagnosis, we are still who we are. We still have spirit, we still have heart, we have the ability and the need to care and to love, to be in relationship with others. We still have our quirks and passions (even if they may not be obvious to those who only see the losses associated with dementia) that make us who we are.

I learned recently from Megan Carnarius* (a dementia specialist, trainer, and author whose vast experience inspires complete trust) that just because a person with advanced Alzheimer’s disease doesn’t seem to recognize you, it doesn’t necessarily mean that they don’t. It might seem that way, as a result of the person simply losing the ability to express that recognition. Their brain may actually be trying really hard to set in motion squeezing your hand or smiling back at you, but due to the disease at work, the neurons are not cooperating. They simply can’t make the requisite connection to effectively cue the squeeze or make that smile happen.

To many people, a diagnosis of dementia feels like a death sentence, a tragedy, the beginning of an inevitable downslide into oblivion. Unfortunately, some physicians encourage this perspective by telling people to “Go home and get your affairs in order” or (to the husband of the wife just diagnosed) “Come back when she can’t feed herself”. (Those are direct quotes from people who have been LIVING WELL with dementia for years, and who obviously rose above this dismal brand of so-called “advice.”) I’m hoping those sorts of instructions aren’t as prevalent as they used to be, but I fear there may still be not yet well-educated-on-this-topic doctors out there who add to a person’s initial trauma of receiving a diagnosis with this brand of callousness.

Sure, a person may well have normal human reactions of Grief, Denial, Bargaining and Depression to deal with no matter how compassionately their diagnosis of dementia is delivered. But in order to pave the way for Acceptance, what if physicians made it a best practice to remind patients that people maintain their personhood and individuality all through life, including when they are living with dementia.* Continuing to live a life of purpose and meaning is what needs to be encouraged, and resources to support this direction should be shared like lollipops.

People may need to be reminded at this early time that it’s the perfect time for them to take stock, to develop a “roadmap to maintaining well-being”* to guide them on this journey. The Dementia Action Alliance (DAA) has created 2 handbooks as part of their “Caring Conversations Tool Kit”, available via their website: www.daanow.org . These handbooks, titled “Living with Dementia/An Unexpected Journey” as well as “Living with Dementia/The Indispensable Handbook for Family and Friends” are terrific tools to help people living with a recent diagnosis and care partners in navigating this new territory. The DAA Tool Kit also contains cards (a few are pictured above) designed to spark meaningful discussion about the person’s priorities and wishes for their life going forward.

Even if you have a loved one who has been living with dementia for some time, these tools might be worth looking at, if only to help adjust one’s perspective concerning what might really be important RIGHT NOW for that person for whom you care. It’s NEVER too late to think about how more joy, purpose and meaning can be found for a person who is living with dementia.

The state of Minnesota now insists (through statutes that came out in August of 2021) that Assisted Livings with designated dementia care communities take a person-centered approach to care needs as well as to engagement needs. Attendance at activities now needs to be documented. Engagement goals must be planned and implemented. These changes hold great potential benefits for people living with dementia in our Ebenezer Memory Care communities. I am excited for the improved quality of life that awaits these individuals after consistent adherence to these requirements over time.

--Marysue Moses, Dimensions Program Coordinator, Ebenezer Management Services

*Thanks to Megan Carnarius, Memory Care Consulting, LLC, www.daanow.org and the pamphlets cited in this blog for inspiring these thoughts on living with dementia.

*See www.daanow.org for more information, blogs and videos by persons living with dementia, as well as information about how to get the Caring Conversations Toolkit mentioned above. There will be a Dementia Action Alliance Conference in September, in Indianapolis. I highly recommend getting your head turned inside out about dementia, as I first did in 2018!