This fall, we had two experts available to answer questions online about dementia care. For those who missed the AMA (Ask Me Anything) event, we’ve compiled the top questions and answers for you here.
Nicole Brackett, the Quality & Training Support Specialist at Homewatch CareGivers, LLC, and Dr. G. Allen Power, a world-renowned dementia care expert and speaker, answered dozens of questions from family caregivers. Dr. Power is a geriatrician and authors of “Dementia Beyond Drugs” and “Dementia Beyond Disease” as well as a musician.
Q: What’s the best way to help a parent or loved one who has been diagnosed with dementia?
A (Ms. Brackett): One of the best ways to help a parent or loved one diagnosed with dementia is being well informed about the physical and emotional aspects of the diagnosis as well as the progression of the disease. Learning great communication techniques can minimize the fears for family and friends, as well as for the person living with dementia. Having patience is crucial for the person receiving care as well as for the person providing care. Getting connected with local support groups early is also important. Recognize when you cannot do it alone as no one can.
Q: What is the life expectancy of someone who suffers from dementia?
A: (Dr. Power): First off, I would ask that we try to avoid the term “suffers from dementia,” which advocates who are living with the diagnosis see as stigmatizing and causing lowered expectations about one’s ability to live fully beyond the diagnosis.
I have heard “7 years” or even “4 years” thrown around, but as more people are identified earlier in the course, we are realizing that these numbers may greatly underestimate. My friend Christine Bryden—one of the first international advocates—is now in her 23rd year of living with a diagnosis of dementia.
Q: How can one better prepare for the grief and emotional side-effects of witnessing the incremental loss of a loved one with dementia?
A (Ms. Brackett): Understanding that a person can live well with dementia allows the caregiver and care receiver to enjoy the new norm. Staying engaged in care, living in the moment and having a sense of humor helps alleviate fears. In later stages, stay connected by participating in the everyday care activities like combing their hair and applying lotion. The person living with dementia will be relying on their senses to experience engagement.
Q: What are the most interesting dementia care trends you are following right now?
A (Dr. Power): The movement to see dementia through the lens of human rights is a game-changer. This will raise the bar in many areas, from workplace protection, to inclusion in communities, in dementia programs and national plans, and in supporting choice and self-determination in everyday life.
My work to reframe distress—not as a “symptom of dementia”—but in terms of deficits in various aspects of well-being has given me striking insights and created a proactive, strengths-based approach to distress that creates better and more sustainable, drug-free solutions.
Q: How can dementia caregivers avoid getting burnout and fatigued?
A (Ms. Brackett): Have a support system in place to include family, friends, and community support groups. Self-care is crucial. I am a firm believer in, you cannot care for others unless you care for yourself first. Get proper rest and allow yourself time to enjoy life’s simple pleasures. Minimizing risk for burnout is ensuring that you are not going it alone. Find ways to give yourself respite care.
Q: What are the most common causes of dementia? Does a decline in memory indicate dementia?
A (Dr. Power): Dementia is not a disease, but a syndrome—a collection of symptoms of changes in thinking processes that varies with different people. There are well over 100 diseases or injuries that can result in dementia. Some have defined causes like vascular dementia related to recurrent strokes. Others, like Alzheimer’s or fronto-temporal dementia, are still not fully understood as to causes. Most types involve some memory difficulty, but not all, and dementia is much more than just memory difficulties. There are usually a few different types of thinking that are affected.
If a person has changes in a few types of thinking that are permanent (not just lasting a few days, like pneumonia with delirium) and that interfere with one’s daily life, we often label that dementia. Of all the causes, the one that seems to occur most commonly is the one we call Alzheimer’s. I have heard everything from 40% to 70% of all dementias being Alzheimer’s—the number changes. But I tell people it’s the most common type of dementia—so we can think of it in terms of: if dementia were all the kinds of soda pop in the world, Alzheimer’s would be Coca-Cola.
But it’s not that simple, because many people have features of more than one kind of dementia in their brains—that often happens with aging—so finding treatments is complex and difficult to accomplish, as well as simply identifying exactly what type of dementia a person has.
Also, many people score abnormally on testing but are still managing fairly well, and don’t make the cutoff for dementia. They are labeled as “MCI”—mild cognitive impairment. We used to assume MCI was a “way station to Alzheimer’s; but having had more time now to follow people, we see that many with MCI never get worse, and some even revert to normal. So it’s very complicated.
Q: Does holiday stress make caregiving (for someone living with dementia) more challenging?
A (Ms. Brackett): Caregiving in general can be taxing, holidays for anyone can be stressful, and combining the two can be challenging. Dementia changes the way people interpret what they see, hear, smell, feel and taste. An important tip to success is to keep events familiar, minimize stimuli and be aware of triggers that lead to agitation. Families need to assess their own limitations. Be OK with delegating some tasks and not trying to do it all.
We offer many Dementia Care Tips here as well.
Any kind of caregiving is going to require coordinating with other people and entities, such as doctors, therapists, insurance, maybe other family members or non-medical caregivers. This is called coordinated care.
We have created a library of support for family caregivers who may find themselves overwhelmed or confused as the symptoms of Alzheimer's disease.
Caregiving and relationship expert, Barry J. Jacobs, has a new book that focuses on marriage for people a couple of decades into their matrimonial journey.