Hospice Is Hope

Columns BY LIN SUE COONEY

Director of Community Engagement, Hospice of the Valley

Hospice Is Hope Caregivers can live well with dementia, too

It’s a staggering thought, but right this moment, there are 5.8 million Americans living with dementia. Arizona has 140,000 cases and we also have the nation’s highest growth rate for dementia. Experts forecast a 43% spike between 2017 and 2025.

And we aren’t ready. There are not enough health care workers trained in dementia care. And family members who are suddenly thrust into the “caregiver role” are not prepared for a disease that lasts years and becomes more challenging.

That’s the bad news. The good news? There is help—resources and education that are breaking down the stigma surrounding dementia and, as Dr. Maribeth Gallagher puts it, “taking the shame away.” Hospice of the Valley’s dementia program director was a family caregiver herself and that  rsthand experience profoundly changed her life. She is a national expert dedicated to educating others living with this disease. Her goal is to help families celebrate the loved one who is present now, and the person who existed in the past.

“We want people to know it’s possible to live with dementia and still do many of the things they love. They can have con

nection and experience joy,” Gallagher says with passion.

Caregivers struggle, in large part, because they don’t understand dementia—and they feel alone and abandoned. Gallagher answers critical questions, provides valuable insight and informs families of an innovative Hospice of the Valley program called Palliative Care for Dementia, designed to educate, empower and support caregivers on this very dif-  cult journey.

Do people know when they have dementia?

I’ve heard some experts suggest that approximately half of people who have dementia in the early stage are aware that something is not quite right. Others living with dementia may not be aware of changes, which naturally poses increased safety risks. Dementia is not a speci c disease and it is absolutely not a normal part of aging. There are anywhere between 70 and 100 di erent types—the most common being Alzheimer’s disease.

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How do people know when to talk to their doctor and get some testing?

From around age 30 on, we may start to notice that it occasionally takes a bit longer to retrieve a word or information. Given enough time, however, we can successfully recall. That is a normal part of aging. But if memory changes begin to frequently interfere with our ability to function as we once did, safely and independently, this is cause for concern. The best thing we can do is request a medical eval

Dr. Maribeth Gallagher, director of Hospice of the Valley’s dementia program, is a champion of caregiver education who gives presentations Valleywide. Gallagher and her team work one on one with patients and families to maximize the quality of life of those living with dementia. (Photos courtesy Hospice of the Valley)

uation to explore possible underlying causes.

Is it true that memory issues are not always caused by dementia?

There are reversible conditions that can cause changes in memory and thinking: hypothyroidism, sleep apnea, electrolyte imbalances, certain medications—just so many di erent things. So, the important thing is to report to your provider when you notice changes that begin to interfere with your normal day-to-day functioning. Testing will begin with a complete physical exam, some blood work, a review of your history and all medications and supplements. What I want to stress most is: Don’t be afraid to be tested if you think something isn’t right. Do it.

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How does Alzheimer’s disease progress over time?

One of the  rst things people notice is short-term memory loss—they might not remember what happened this morning or a recent conversation. There can be trouble  nding the right words. Over time, there is commonly a decline in insight, judgment, visual-spatial skills, thinking, reasoning, planning and language abilities. A person living with dementia may have di culty following through on a request to “get dressed,” because getting dressed actually requires a sequence of many actions that maybe now have to be broken down into speci c step-by-step directions. When we talk about dementia, many people think it’s just memory.

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But it’s much more. It in uences how we think, function and behave.

What do caregivers need to know?

This complex condition requires a considerable amount of education and support. Imagine if you lose your ability to think, reason and use language. You will still have the same needs as before, but now you will have more di culty getting them met. Caregivers need to develop skills to anticipate—what is it that you need? What brings you comfort in body, mind and spirit so I can optimize your quality of life? What makes you feel seen, heard and valued? And how can I care for you physically to help you be the best you can be? The good news is that caregivers are generally experts when it comes to knowing what gives their loved one comfort, pleasure and a deep sense of belonging.

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www.LovinLife.com

Explain the stress and frustration that dementia caregivers experience.

Dementia care partners have high morbidity and mortality rates, because no matter how smart, spiritual and  nancially stable we may be, this kind of caregiving requires absolutely everything we have and more. Caregivers generally have very little, if any, education when it comes to understanding dementia and how to meet the numerous challenges that commonly arise. They lack the resources and support to help them successfully sustain their caregiving e orts Hospice...continues on page 21

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