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

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Having dementia, such as Alzheimer’s, brings on special challenges when it comes to health and medical care.

Last fall, my friend and colleague Paula Spencer Scott interviewed me on what family caregivers can do to improve the health — and healthcare — of a loved one affected by dementia.

The interview turned into a chapter in her terrific new book, “Surviving Alzheimer’s: Practical tips and soul-saving wisdom for caregivers.”

Below, I share three things I wish more caregivers knew about better healthcare for someone with a diagnosis of Alzheimer’s or another dementia. (Read about two more things to know in the follow-up post here.)

5 things I wish caregivers knew about healthcare & dementia

(Note: The following is an excerpt from Paula Spencer Scott’s new book “Surviving Alzheimer’s – Practical tips and soul-saving wisdom for caregivers.” I’ve added a few links to her text.)

A geriatrician urges you to shift how you think about medical care after an Alzheimer’s diagnosis; it can make a world of difference for your loved one and you.

#1: I wish dementia caregivers knew… that what seem like “little things” can make people much worse. Untreated pain, constipation, too much novelty or stress, medication side effects — you don’t think they’re that big of a deal, but for an older adult, they can be huge. Often these “little things” make a person with dementia much more confused or difficult than he’d otherwise be. These seemingly minor problems can even wind up sending your loved one to the emergency room or hospital, which is a stressful and risky experience for someone with Alzheimer’s. And that means another crisis you and the rest of your family will have to deal with.

• Pay attention when a new problem develops, especially if it’s over hours or days. Whether it’s something physical, behavioral, or with thinking skills, don’t automatically assign every change to the dementia. Make sure something else isn’t going on.
• One of the biggest problems caregivers don’t always act on: Sudden worsening in mental abilities. This indicates delirium, which means there’s likely something wrong, like an infection. Often a caregiver will mention to me at a scheduled exam, “She’s been much more confused in the past week.” We often discover a urinary tract infection or medication side effect, but it’s not uncommon for us to find really serious medical problems underlying the new confusion. In one case, we discovered a large pocket of pus next to an elderly woman’s lung, which explained her cognitive downturn. Don’t wait a week. Don’t wait until the next appointment you have. Call the doctor or advice-line that day, and be ready to bring her in today.

#2: I wish dementia caregivers knew… to have doctors re-evaluate the care plan for other chronic illnesses in light of a dementia diagnosis. Most older adults have more things going on than the dementia.  Many of these chronic illnesses require self-care that can get hard when you have memory loss and cognitive changes.

• Common examples: People with insulin-requiring diabetes should be given a simplified insulin regimen. It can also be hard for people with dementia to properly take “as-needed” medication, such as for pain or for COPD; instead the plan needs to be simplified, or you need to recruit more help to keep track of how the person is doing and how often they need to take the medication.
• It’s not bad to simplify a care plan! Most doctors can do this, but you have to ask for it because specialists, especially, are focused on the problem at hand for them. Ask, “Is there anything we can simplify to make the care regimen more doable?”  Often, if this happens at all, it happens too late. That’s a mistake.

#3: I wish dementia caregivers would … get used to thinking about the real pros and cons for every aspect of care. I call these the benefits and the burdens. Many treatments and procedures are overly burdensome to people with dementia and may be less likely to help than people realize.

• Here’s a common scenario: Someone with dementia is found to have a mass that’s possibly cancer. The doctor wants to biopsy it and, if it’s cancer, offer whatever treatments are possible. You’d want to ask: “How stressful will the evaluation and treatment (if necessary) be? What would happen if we just watched it? And what are the answers to these questions in light of this person’s overall health?” If the person has been in and out of the hospital over the past couple of years due to congestive heart failure, for example, then a full-blown cancer work-up may not be the right thing to pursue.
• For any major diagnostic procedure or treatment, ask, “How will this help with my loved one’s care overall? And what are the likely burdens?” This is especially true for same-day treatments that involve sedatives or anesthesia. Often these tests and procedures are quite stressful and even risky for people with dementia, but many doctors don’t focus on this when they recommend the test. So you really want to be clear on how the test results might help you better manage the person’s overall health.
• Get the doctor to help you think about the big picture of the person’s health. Doctors won’t always remember to do this. Specialists, especially, tend to focus on the specific problem you’ve brought to their attention and how to fix it. They each focus on their own tree, and that can be to your detriment, because you need help with the whole forest. You need to know which are the trees to pay attention to most.

[Interested in Alzheimer’s? Be sure to read the follow-up post, “2 More Things to Know About Better Healthcare in Alzheimer’s.”