Lost and Found in the Alzheimer’s Forest

This article is based on a conversation by Kim Hegwood, estate planning and elder law attorney, and Ruth Dennis, Alzheimer’s educator and author of Mindful Dementia Care: Lost and Found in the Alzheimer’s Forest. For the full conversation on this topic, view the Life Happens podcast episode with Kim and Ruth here.

What Is Alzheimer’s Disease?

One of the most common misconceptions about Alzheimer’s disease is that Alzheimer’s and dementia are the same. In fact, Alzheimer’s disease and dementia are related, but they are not the same. The Alzheimer’s Association describes dementia as an umbrella, and the rain drops falling from it are the different types of diseases, including Alzheimer’s.

Ruth Dennis describes the analogy of a tree when referring to Alzheimer’s and dementia. The roots of the tree symbolize the factors that can cause or contribute to dementia symptoms, including depression, diabetes, untreated hypertension, untreated sleep apnea, and post-traumatic stress disorder. Some of the most notorious symptoms of dementia include short-term memory loss, confusion, social withdrawal, difficulty with logic and reasoning, addictive behaviors, and obsessive behaviors. From the trunk of that tree, the different diseases branch out. One disease is Alzheimer’s, which is the best-researched and more well-known. There are also Parkinson’s-related dementias, Pick’s disease, frontal temporal lobe dementia, dementia related to addiction, genetic dementia such as Down Syndrome, and early-onset dementia. The trunk of this tree is dementia, while Alzheimer’s is one of the branches.

The Signs That a Loved One May Have Dementia

Many people tend to see a loved one misplace their keys or lose their phone, and they conclude that their loved one must have Alzheimer’s or dementia. Ruth explains, “I would look at what we call ‘Person, Place, or Thing.’ Is it affecting your relationships? Are you withdrawing socially? Are you having difficulty with your emotions? Are you having problems managing your home? Are you having problems when doing activities you were once good at? Are you behaving in a way that is not normal for you around things like money? Are you ignoring your health issues? About 10% of all those branches of dementia are treatable.” Ruth continues that it is important to get a good physical workout, get bloodwork done, get your heart health checked, and get a sleep study. The key is to find out if there are any ailments you can treat or prevent. Early detection of dementia is crucial because medications are typically more successful when used earlier on.

Myth #1: “Home Is Always Better”

When an aging loved one begins facing the challenges of a dementia diagnosis, the first thought that family members have is that the loved one with dementia should remain in their home. Ruth explains, “It’s a cultural tendency to say, I want mom or dad or my husband or my wife to always be in our home. We built this home, we should stay in this home, and this is the best way. This is not always true.”

“One of the big factors in worsening dementia is depression and isolation. A lot of folks need more help as they get deeper into dementia. The person that they have the most contact with is the caregiver, who may be constantly telling them what to do. I have a great boss, so forgive this analogy, but I would not want to have him five feet away from me for 8, 10, or 12 hours a day telling me what I need to get done. It’s a similar relationship for someone with dementia and their caregiver; it’s a simple relationship.”

Many people with dementia tend to want a peer relationship, where they can speak to someone who is going through the same experience. Ruth says, “What a lot of folks really crave and get out of adult day programs or assisted living facilities are peer relationships. They want someone who can hear their story multiple times and still think it’s funny. If you are a caregiver alone in a house, which COVID amplified greatly, and someone is telling the same story or same joke or asking for the same thing multiple times a day, you may lose your patience. You might get tired. There’s this reassurance I have seen over the years where elders who are deep into dementia develop really nurturing and supportive relationships with one another. You don’t get that one-on-one with a caregiver, no matter how good the caregiver.”

Myth #2: “My Loved One Is Not Like the Others”

For many families, there is a tendency to look for a miracle. It can be easy to point out when someone else may have dementia, but it can be difficult to recognize the decline of your loved one. Ruth describes an experience from a Vista Living Community, “What ends up happening is that folks will tour the living facility and they will see the residents and think it is a great place. They think the staff is so loving and warm. Then they say, ‘Oh, but my mom’s not like those people. She wouldn’t have anyone to talk to.’ Then the mom is living in a beautiful apartment complex, and no one will sit with her in the dining room because she repeats herself. Your parent or spouse may not be like those people right now. But at two in the morning, they probably are or worse.”

Memory Loss Is Not the Only Sign of Dementia

For a lot of families, it can also be difficult to discern when their loved one has dementia because the loved one may still appear competent. Seniors may have great verbal and social skills, but poor functioning skills. Professionals with less experience may not recognize when an individual has dementia, because the individual may appear competent and well-adjusted.

Memory loss is typically not the first sign of dementia, nor is it the only sign. The different types of dementia can affect different parts of the brain and can have affects on judgement, reasoning, emotions, daily functions, and verbal communication. It is important to look at dementia as a whole, and to take into account all the differences and variations.

Ruth tells of some of the dementia patients she has seen: “The patients may not be able to do the basic daily tasks that keep them functioning, such as getting groceries or taking their medications properly, but they will be able to talk up a storm and really convince someone that they can be independent. Some patients even claim to be better and try to convince their loved ones to change their power of attorney, revoke their guardianship, or write a note saying they can live in independent living. I have seen patients convince folks to let them walk out of the building with them because they seem like a visitor.”

Kim adds, “Some people are very good at hiding their diagnosis. If you hadn’t seen them at their worst, you wouldn’t know when they’re having a good day or bad day. Sometimes it can be as easy as visiting their home or opening up their refrigerator.”

To contact Ruth Dennis or learn more about Vista Living, call (505) 927-4407 or visit vistaliving.com. To order a copy of Ruth’s book, Mindful Dementia Care: Lost and Found in the Alzheimer’s Forest, visit mindfuldementiacare.com.

At Your Legacy Legal Care, we assist individuals with dementia in putting a plan in place for long-term care. To schedule a strategy session to discuss estate planning or elder law, call our office at (281) 218-0880 or contact us here.