It’s a staggering thought, but right this moment, there are 5.8 million Americans living with dementia; Arizona currently 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 healthcare 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 firsthand experience profoundly changed her life. She is now 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 connection and experience joy,” Dr. 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 difficult journey.
Question: Do people know when they have dementia?
Answer: 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 specific disease and it is absolutely not a normal part of aging. There are anywhere between 70 and 100 different types — the most common being Alzheimer’s disease.
Q: How do people know when to talk to their doctor and get some testing?
A: 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 evaluation to explore possible underlying causes.
Q. Is it true that memory issues are not always caused by dementia?
A: There are reversible conditions that can cause changes in memory and thinking: hypothyroidism, sleep apnea, electrolyte imbalances, certain medications... just so many different 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 get testing if you think something isn’t right. Do it.
Q: How does Alzheimer’s disease progress over time?
A: One of the first things people notice is short-term memory loss — they might not remember what happened this morning or a recent conversation. There can be trouble finding 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 difficulty 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 specific step-by-step directions.
When we talk about dementia, many people think it’s just memory. But it’s much more. It influences how we think, function and behave.
Q: What do caregivers need to know?
A: 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 difficulty 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.
Q: Explain the stress and frustration that dementia caregivers experience.
A: Dementia care partners have high morbidity and mortality rates, because no matter how smart, spiritual and financially 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 efforts while maintaining their own well-being. They often feel isolated — like they are carrying the strain alone. This is where we, as a community, can make a positive difference by learning about dementia and offering our talents to support them.
And as a society, we need to shatter the stigma surrounding dementia. There is shame, as if someone with dementia is stupid.
They’re not — they have brain changes over which they have no control.
Q. It truly does require a village. How does the Palliative Care for Dementia program help?
A: It’s for people at any stage of dementia — even without a diagnosis, because over half the people who have dementia have not received a formal diagnosis.
We provide psycho, social and educational support to caregivers — and because we go into the home, you don’t have to bring your loved one to an office. We’re available 24/7 because many times issues crop up in the middle of the night or on weekends.
So instead of going to the emergency department, you call and there’s always a nurse on the other end. I just really want to encourage all caregivers to educate themselves as much as possible and look for something or someone who can give you emotional support on this journey.
Lin Sue Cooney is director of community engagement for Hospice of the Valley. Visit hov.org.