When Dementia Changes Sexual Behavior: Review of Groundbreaking New Book for Caregivers

My mom, Judy, age 77 in her memory care facilityIs it important to understand and respect the sexual needs of people living with dementia?

Dr. Douglas Wornell, author of the new book “Sexuality and Dementia”—the first comprehensive book of its kind—says “yes.” He addresses common challenges caregivers face when dementia affects intimacy or causes inappropriate behavior.

My mother, Judy, had vascular dementia from small strokes, and probable Alzheimer’s disease. One day she was found in her memory care assisted living facility in the room of a male resident, sitting down on the edge of his bed with her pants off and her Depends on. The man—a short, portly fellow I knew my mother had eyes for, a man we’ll call “Bill”—was standing in front of her with his pants and underwear off. The staff couldn’t tell what had occurred between Mom and Bill exactly, but the two were “redirected” to other activities, and I was asked to take my mother to the E.R. for an exam. Bill’s family, in turn, was required to hire private aides around the clock.

Many of us who care for a family member or friend with Alzheimer’s disease or another dementia are likely to encounter this kind of situation, or something similar. It can be challenging and upsetting, even if you believe, as I did, that your loved one with a cognitive impairment should be allowed to express their sexuality in safe ways.

Fortunately, family caregivers and health care professionals can now refer to a slim but comprehensive new book, “Sexuality and Dementia: Compassionate and Practical Strategies for Dealing with Unexpected or Inappropriate Behaviors,” by Dr. Douglas Wornell (Demos Health, 200 pages).

Read my review of this book, and more about my experiences with Mom, in my post this week for caregivers.com.

Facing Mother's Day When Your Mom Has Dementia

Mom and me at my college graduation, about 10 years before symptoms of dementia began.

My mother, Judy, passed away a little over a year ago, but as Mother's Day approaches, I don't feel sad. I know that a lot of people do feel devastated around this time of year when their mothers are living with dementia or gone after a long decline. I don't feel sad, because I was able to enjoy many sweet, loving moments with Mom before she died, even when she was in the final stages of dementia. 

I feel lucky that what I remember the most of those years are not the stresses and trauma of caregiving (and there was plenty of that) but the feeling of holding her hand, looking into her eyes, and noticing the smallest of expressions on her face. Over time, I learned that we could communicate with each other through more than words, and that she still loved me even if she was unsure at times of who I was. She knew I was very special to her, and that she was very special to me. Caregiving helped us overcome what had been a challenging mother-daughter relationship, to grow closer. When I think of Mother's Day I think of that essence of Judy, deep down inside beyond the dementia, the essence of her spirit that continued to nurture me as her daughter and her friend well into the final stages of the disease. 

In honor of Mother's Day, I'd like to share a blog post here by Deborah Shouse called "Top 3 Ways to Celebrate Mother's Day When Your Mom has Alzheimer's."  I love Deborah's writing (I reviewed her book "Love in the Land of Dementia" here). She acknowledges the pain of losing so much of the vital person we knew to Alzheimer's or another dementia, but she also appreciates and celebrates the ways we can still connect with their spirit in the moment.

This is the beginning of Deborah's post today on her blog "Deborah Shouse Writes." You can click below to read the rest on her blog.  

“I don’t know what to do about Mother’s Day,” a friend recently told me. “I used to celebrate with my mother, but Mom doesn’t really recognize me now and the holiday won’t mean anything to her.”

My friend was not alone in her dilemma: according to the Shriver Report,  ten million women either haveDeborah ShouseAlzheimer’s or are caring for someone with it.

I’d faced the same issue with my mom as she sank into Alzheimer’s. But I’d decided that celebrating Mother’s Day was important for me and for my family, even if Mom didn’t truly understand what was going on.

Read the rest of her blog post here.

How New Dementia Caregivers Can Become Care "Partners"

Mom, age 74, and me when she lived in assisted living, 2 years into my 8-year caregiving journeyA reader on eCareDiary.com writes:

"We just found out that my husband has early-stage dementia. This news is a big shock to both of us and I know our relationship is going to go through some changes. How should I prepare myself?"

This is an excellent question.  For my post this week as a consultant on eCareDiary.com, I try to answer it.

As I was writing my response, I thought of my neighbor, whose wife has just been diagnosed in her late-60s with Alzheimer's disease. He and I talked over coffee one day, and I hope my tips about becoming a "care partner" will help anyone like him who is new to dementia caregiving.

To the reader's question, I responded:

"I’m very sorry that you are both facing this diagnosis, as it is indeed the beginning of what will most likely be a challenging journey. I am glad, however, that you have already sought help as your husband’s care partner. So often we do not realize that we need support until we are exhausted and burned out.

First, let me note that I use the term 'care partner' instead of 'caregiver' because if you think of yourself as a care 'partner' for your husband, it will remind you that he is much more than a 'dementia patient.' A person with dementia continues to have strengths and abilities, to experience a full range of emotion, and to be able to give as well as receive care. 

How can your husband continue to care for you? In early-stage dementia, for example, your husband may be able to help make some decisions about his care, so that those decisions do not fall entirely onto your shoulders. As his dementia progresses, he will most likely be able to care for your emotional needs at times by listening to you or sharing a hug. Even if he loses his ability to speak, as is common in the later stages of dementia, you will find ways to communicate with each other and share affection..."

Read the rest of the post on eCareDiary.com. 

Driving and Dementia: 11 Steps to Take if a Person Should No Longer Drive

Do you have a family member or friend with early-stage Alzheimer's disease or another dementia who is showing signs of losing their ability to drive safely? This is one of the most challenging issues to deal with, whether we are living with dementia ourselves or are a care partner for a person with dementia.

Two weeks ago I posted the first article in a two-part series on driving and dementia, "5 Important Questions to Ask Yourself" if you are concerned about a person's driving but are not sure they have reached a point where they should give up the keys. That post also included tips on how to talk with the person with dementia about the issue over time, and to try to make the decision together, if possible.

My post this week on caregivers.com, "Senior Caregiving: 11 Steps to Keep an Unsafe Driver off the Road," outlines further steps you can take to either

a) persuade a person to retire from driving, or

b) make sure that they no longer have access to the wheel. 

Read "11 Steps to Keep an Unsafe Driver off the Road" here.

Women are at the Epicenter of the Dementia Epidemic

Mom and me about 10 years before her symptoms of dementia beganDid you know that 65% of all people with Alzheimer's disease are women? That 60% of Alzheimer's caregivers are women? That a woman age 65 or older has a 1 in 6 chance of developing Alzheimer's disease, compared to 1 in 11 for a man? 

I have been thinking of writing a second book (expanding on the information in my first book's appendices) tentatively entitled "A Woman's Guide to Lowering Your Risk of Alzheimer's Disease," because as women we learn about our risk factors in a piecemeal fashion--a little here and there, and we often hear nothing about the less well-known risk factors, such as having sleep apnea or insulin resistance. We're also so busy taking care of others that we let our own health slide. 

Today the Alzheimer's Association released its 2014 Facts and Figures Report, which includes some statistics on women and Alzheimer's that I hadn't seen before. For a summary of that information, and a cool 1.5-minute video, check out their webpage. 

For now, a second book will have to wait, but I hope to share more information in this blog about the particular risk factors for women, and the steps we can take to reduce our risk, particularly if we have a family history of Alzheimer's disease or another dementia.

To read more about women and Alzheimer's, you can purchase a report by Maria Shriver and the Alzheimer's Association called "The Shriver Report: A Woman's Nation Takes on Alzheimer's" ($9.46).