In my last post, I listed three things that I often wish more caregivers knew, about getting better medical care for a loved one with Alzheimer’s or another dementia.
In this post, I’ll list two more important things for dementia caregivers to know. Again, this will be an excerpt from Paula Spencer Scott’s book “Surviving Alzheimer’s: Practical tips and soul-saving wisdom for caregivers.”
But first a quick word on Paula’s book, which as best I can tell is really unique. On their own, her tips on handling common everyday problems — such as personality changes, memory glitches, difficult behaviors, and personal care issues — are good enough that I’d recommend her book to family caregivers because I love the practical “Why This, Try This” format she provides. She also offers solid advice on managing caregiver stress and relationship tensions.
Yet what’s really nifty about Paula’s book, is that she combines these practical tips with a section called “The Big Picture: Insights & Inspiration from the Wizards of Alz.” This is a compilation of twelve condensed expert interviews, and yours truly was very honored to be included.
Each expert has a different contribution to make to dementia caregiving. Whereas I focus on how caregivers can better manage the health issues, Bob DeMarco offers advice on “stepping into Alzheimer’s world,” Anne Basting provides guidance on using art therapy and storytelling, Teepa Snow suggests ways to decode the secret language of dementia, Leeza Gibbons encourages caregivers to not forget about themselves, and researcher Dr. Richard Isaacson provides cutting-edge advice on diet and dementia. (To see the full list of experts, you can preview the table of contents here, by clicking “look inside.”)
This creates a really rich and diverse package of perspectives, insights, and practical advice. So if you are looking for help surviving as a caregiver to someone with Alzheimer’s or another dementia, I encourage you to consider Paula’s book. (Note: Paula was my editor at Caring.com, and I also consider her a personal friend. But I wouldn’t tell you I recommend her book unless I really did like it.)
And now, back to what you can do, to get better healthcare for a loved one with dementia.
Two more things I wish caregivers knew about healthcare & dementia
Note: The following is an excerpt from my contribution to Paula Spencer Scott’s new book “Surviving Alzheimer’s – Practical tips and soul-saving wisdom for caregivers.” I’ve added a few extra links.)
#4: I wish dementia caregivers knew… it’s really important to have somebody knowledgeable about the person with Alzheimer’s come to the medical visits. Too often, people with mild dementia come alone. Sometimes it’s because they want to highlight their independence. Or it’s just plain hard for the caregiver to come in.
- The trouble is, people with dementia often have difficulty providing doctors with enough information, or with details on a symptom or a problem. This means important health issues can be missed or not get properly addressed. Anybody, whether you have dementia or not, can have trouble remembering what the physician says. Everybody needs an advocate with them at doctor visits — but especially people with dementia.
- What if the person doesn’t want you to come? Try to explain that you’d be helping them retain important information. But if they won’t let you, or you can’t be there, you have options. At minimum, you can write up your questions and concerns and send it to the doctor before the appointment. Some doctors have “Share the Visit” technology that allows caregivers to videoconference. Or you can ask the doctor to call during the visit or send back a summary in writing or via email. Another approach is to sit in on part of the visit but also to step out for a bit so that the person with dementia gets some private time with the doctor.
#5. I wish dementia caregivers would … start the process of advance care planning with the doctor as soon as they get a diagnosis or know they’re dealing with dementia. Good advance care planning should always start with conversation, reflection, and learning more about what to expect health-wise down the road. And of course, because we want the person with dementia to be as involved as possible, earlier is always better.
- To learn what to expect regarding dementia, consider watching videos online together of people with advanced dementia. They can be hard to watch, but they’ve been shown to change the preferences that people express in their health planning. Be sure to consider what other health problems, besides the dementia, might bring on a life-threatening crisis or cause real health declines.
- The hard, overlooked reality: People with dementia often have other serious illnesses that may bring the end before dementia does. For example, someone with advanced COPD who has a bad crisis and ends up on a breathing machine won’t be able to tell you his preferences, even if his Alzheimer’s is mild stage. So it’s important to talk about how other major diagnoses are likely to evolve, while you can both discuss them. Someone who has dementia and who’s on kidney dialysis eventually won’t understand why he’s being held down and poked, and probably won’t do well.
- Ask for help understanding the overall health picture. Not all doctors are comfortable helping families with advance care planning. If yours isn’t, try asking something like, “Before we do this paperwork, we’d like to review the overall medical picture and what conditions are most likely to affect him.” Ask, “What might possibly happen in the next one to two years? What key medical decisions can I be expected to have to make in the next year or two?”
- Revisit documents as the person’s health evolves — every time there’s a major change in health that changes the person’s abilities (like a stroke) or health trajectory (like a cancer diagnosis). Repeated hospitalizations can also signal a time to reassess the advance directive; people may decide to prioritize different things as a person becomes frailer or sicker.
So often I have families tell me “Oh, my mother did her advance directive 10 years ago.” Well that was then! Now that she’s in a different health situation, she – or her surrogate decision-maker – may have different ideas on what should be done in the event of a serious health crisis or if it seems some form of life support may be needed.
- Of course no one likes to think about health crises and how our loved ones might die. But in the long run, this can really reduce the stress on caregivers. One study showed that when families end up making decisions at the end of a loved one’s life, the negative stress effects from factors like uncertainty and the logistics of decision making can last for months or years; advanced directives specifying treatment reduced caregiver stress.
Plus, it’s important to try to honor a person’s wishes and preferences at the end-of-life. Planning gives people a way to think about those wishes, share their thoughts with loved ones, and document them so that doctors later have guidance on what to do.
Questions about these recommendations? Post them below!
Bobbie nordlow says
As a family we all put my mom in a facility that is directed to memory care . Ok let’s fast follow my mom did not fit into this mold ,who knew they including the doctors what to give her drugs they call medications. We are learning on my mom’s time and we cannot leave her at this facility. Now what who can watch her and give her the time needed for her care. Thank you for listening I needed to vent. Bobbie N.
Leslie Kernisan, MD MPH says
Thank you for sharing your story. Memory care works out for some people but not for others, especially if the facility is not well run. It can take a while to find a suitable facility. Hiring a good geriatric care manager who knows the local options can be helpful. Some areas also have smaller residential facilities that only house a handful of older adults (in California they are called “board and care” facilities), and I have seen some of those work well for people with memory problems. Again, a local care manager should know about local options. Good luck!
Stephanie Smith says
It’s a very difficult situation for people suffering with dementia. As the granddaughter of someone with it, it’s a very tough thing for both the afflicted and family member to go through. They want their independence, but as you mentioned, it is difficult for them to retain information that the physician provides, and it’s difficult for the afflicted to provide accurate information as well. If you’re able to go with them to their visit, it makes the process much easier. It’s all about communication and letting them know they’re loved that you want to help, so they can get the health and social care they need. Thanks for sharing this useful information.