Have you been, or has your loved one been, diagnosed with dementia? Do you dread the journey that lies ahead? Here are a few facts and resources to help you face this difficult challenge.
Do not be afraid
Almost all of us who are over 50 fear that we will get dementia someday. But not many of us will actually get it. Among people who are over 65 years old, fewer than one out of 12 people (less than 8%) have dementia. Many centenarians (people over 100 years old) do not have dementia (source: The Merck Manual of Health and Aging, p. 307). Dementia is very different from normal aging.
What does normal aging look like? Each year, starting at age 25, our brains lose 1% of their processing speed. By age 50, we notice this, with chagrin. We also do not retrieve remembered information as quickly. Imagine how many names you learned before you were 20. Now imagine how many names you learned by age 50. When we are over 50, our “file cabinet” of names has a lot more items in it. No wonder it takes a little while to sift through that large volume of information to find the correct name when we see a familiar face, or hear a familiar voice. These are among the challenges of normal aging.
But remember that normal aging also has many advantages. At age 56, I value highly my life experiences. I would not trade in that hard-earned wisdom for the speed and agility that my brain had when it was young. As a grad student in my 50s, I was fascinated by classes about human behavior. Each concept that my professors presented was something that I could mentally illustrate with my observations of people whom I have known.
Recall from history and literature that most cultures around the world, in most periods of history, have revered elderly persons as sources of wisdom and keepers of highly-valued traditions. Our culture might be in a minority in that it tends to glorify youth, and dismiss old age.
Get the facts
If you think that you or a loved one is experiencing some memory loss—not just normal aging—I encourage you to get the facts. As in many areas of life, even unpleasant facts are better than out-of-control fears. A good person to ask is your family doctor. He or she, or a member of the clinical staff, is likely to administer a standardized assessment at some point. There are several questionnaires for assessing memory loss that are well-researched, reliable (consistent) and valid (meaningful). These mental-status questionnaires take into account the person’s age and educational level, both of which can affect his or her scores. The questionnaires look not only at short-term memory, but also at the person’s ability to complete several different mental tasks.
If you or your loved one scores below average for their age and educational level, that does not necessarily indicate dementia. There are several medical conditions that can mimic memory loss—but unlike memory loss, they are entirely reversible. During grad school, I interned in a medical clinic that primarily served older adults. Among my happiest moments were the times that I administered a mental-status questionnaire and found a normal result in a person whose result had previously been below average. These persons’ mental status returned to normal once they were treated for ordinary medical conditions such as urinary tract infection, vitamin B-12 deficiency, or depression.
If your doctor determines, after carefully eliminating all other possibilities, that you or your loved one has dementia, what comes next? Safety! You and your loved one need to think about safety, focusing on 5 areas of possible risk, namely:
- Driving. Is it still safe for your loved one to drive? If not, ask your doctor for help in having this difficult conversation with your loved one. What alternatives are available in your community (e.g. special public transportation services for handicapped persons, rural transportation that is sometimes covered by Medicaid, ridesharing services such as Lyft or Uber, and organizations of volunteers who serve elderly persons)?
- Cooking. Sometimes persons with dementia forget to turn off burners on the stove, thereby causing fires. If needed, how can you protect against this?
- Medications. Sometimes persons with dementia skip doses or double-up doses of their medicines. Depending on the medicine, this can be dangerous. A first step in medication safety is to buy a pill container with a compartment for each day of the week and each time of day. Fill this pill container for your loved one each week, and check that the medicines have been consumed. Later, if the dementia progresses, you may need to hand medicines to your loved one, and watch him or her take them.
- Wandering. Sometimes persons with dementia get lost when they go out on walks. Even frail persons can walk surprisingly far. They may be searching with great determination for a place that they cannot find. Sometimes a person with dementia is searching for a place that no longer exists, such as a childhood home. Caring neighbors can be made aware of your loved one’s tendency to wander, so that they can gently redirect your loved one back home.
- Bills and taxes. Persons with dementia can inadvertently cause major financial problems by failing to pay bills or taxes, or by spending imprudently. If your loved one has been diagnosed with dementia, consider helping them find a financial services firm that can regularly pay their bills and taxes. Alternatively, try to persuade your loved one to sign a power of attorney that allows a responsible person to handle their finances for them when the need arises.
A brain disease
Sometimes well-intentioned family members urge a loved one with dementia to try harder to remember information, or to practice skills. Unfortunately, the person with dementia cannot reduce the symptoms by trying harder. Urging them to try harder is based on a misunderstanding of the nature of dementia. Our common experience is the raising of children, who constantly learn new information and gain new skills. It is very hard for us to accept that in a person with dementia, the process goes in reverse—no matter how hard they try, and no matter how hard we try.
Remind yourself frequently that dementia is a brain disease characterized by biological changes in the brain. Throughout the course of dementia, brain tissue is actually lost. The brain of a healthy, adult human weighs about 3 pounds. The brain of a person with end-stage dementia weighs only 1 pound. Recalling this fact can help a caregiver to be compassionate, patient, and understanding with their loved one who has dementia. Assume that at each stage of the disease, they are doing the best they can with the reduced amount of brain tissue that is left.
An umbrella term
Dementia is an umbrella term that includes over 100 separate illnesses. Alzheimer’s is the most common form, accounting for over 60% of cases. The second most common form is Lewy Body Dementia, which has a distinctive pattern of symptoms. The third most common form is Vascular Dementia, which can result from strokes—either a major stroke, or a series of minor ones.
Some helpful books
Here are my favorite books about dementia, with a brief description of each.
The 36-hour day: A family guide to caring for people who have Alzheimer Disease, related dementias, and memory loss, by N. L. Mace & P. V. Rabins. This is the classic, comprehensive guide to caring for a loved one with dementia. It can be used as a reference book: check the index for the topic you need, and read a few pages about it.
Dementia caregiver guide: Teepa Snow’s Positive Approach to Care techniques for caregiving, Alzheimer’s, and other forms of dementia, by T. Snow. This book describes simply and briefly what life is like for a person who has dementia, at each stage of the disease; and gives practical instructions on how you as a caregiver can help the person.
Alzheimer’s: A Broken Brain, by Dementia Education and Training Program, Tuscaloosa, Alabama. Available from the University of Alabama. Trigger warning: Do not look at this booklet if medical images bother you. This short booklet demonstrates in an unforgettable way that dementia is a brain disease. The booklet states 10 key facts about dementia, one sentence each. Each fact is illustrated with photos of 2 autopsied brains: the brain of someone who died from dementia, contrasted with the brain of someone who died of another cause. The difference between the brain images is dramatic.
The whisper of the fallen oak: A family’s guide to early, middle, late, and end-stage dementia, by R. Wallace. Available from Wings of Change Publications. This booklet is a short, simple guide to the stages of dementia, and how to care for the person at each stage.
Caregivers find meaning and purpose
Although caring for a person with dementia can be difficult and exhausting, it can also be extremely fulfilling. In 2016, researchers Cheng, Mak, Lau, Ng and Lam studied 57 caregivers of Alzheimer’s patients. The researchers identified ten positive themes that the caregivers reported, including “a sense of purpose and commitment to the caregiving role… increased patience and tolerance… cultivating positive meanings and humor… developing a closer relationship with the care recipient… and… feeling useful helping other caregivers.”
The most important thing to remember about your loved one who has dementia is that he or she has the same value, dignity, and worth as you and I do.
The most important thing to remember about your loved one who has dementia is that he or she has the same value, dignity, and worth as you and I do. His or her value as a person is intrinsic, and does not depend on cognitive ability. In order to relate to your loved one, you may need to learn new skills. These skills are worth learning, because the person is worth relating to. If you make the effort to relate to a person with dementia, you will be rewarded in unexpected ways.
[I wish to thank Laura A. Ellis, LMSW, James W. Ellor, Ph.D., D.Min., LCSW, Dennis R. Myers, Ph.D., LCSW, and Teepa Snow, MS, OTR/L, FAOTA, for teaching me the above material.]
Written by: Catherine C. Stansbury, LMSW, supervised by Melissa L. Gould, LCSW-S. Catherine is a therapist here at Austin Family Counseling. She is an EMDR Trained Therapist specializing in trauma therapy for adults. She has a Master of Social Work from Baylor University. She is a Certified Practitioner of the MBTI, trained by The Myers & Briggs Foundation; a PAC Certified Independent Consultant, trained by the Positive Approach to Care organization; an associate member of the Aging Life Care Association; and an associate member of the EMDR International Association (EMDRIA).