Getting started talking about Alzheimer’s can be tricky. You and your children will most likely be experiencing similar reactions, though they may not be verbalized or processed in the same way. To assist your discussions as a family, try one of these topics. Remember, this is just the beginning of your journey. There is a lot to learn about Alzheimer’s, and your family’s version of caring for yourselves and your loved one will be unique.
Alzheimer’s is a disease which affects the brain. It can happen to anyone and is not contagious. Over time it reduces a person’s ability to acquire, understand, and use the information that surrounds us. While the exact causes of Alzheimer’s is still being learned, we see a high number of senile plaques (a protein fragment called beta-amyloid within all brains) and neurofibrillary tangles (a protein called tau, also found within all brains) in persons with Alzheimer’s. The plaques typically get removed from the brain regularly, but those with Alzheimer’s instead experience a buildup of this plaque which, as it accumulates, damages and interrupts communications between brain cells. Meanwhile, the tau protein combines with other tau proteins to form long, twisting fibers within the brain that eventually strangle the neuron. This tangle then affects other tau proteins in neighboring cells, causing brain cells to degenerate and die. (Kosik, 2015)
One confusing thing about Alzheimer's is that, although the person is quite sick, they may not look sick on the outside. According to the National Alzheimer’s Association, there are ten warning signs for Alzheimer’s:
If you notice these changes in your loved one, don’t ignore them. Schedule a visit with a doctor right away. While your loved one may find the accusation embarrassing, early detection and care are the best ways to help them.
First, it’s important to let them know they are still loved, both by you and the person with Alzheimer’s.
Second, provide them with opportunities to share their feelings. That could be aloud in discussions with you, through activities as simple as journal keeping, or by speaking with a counselor or therapist of their own.
See Healing Activities for more suggestions.
Children can reflect their feelings differently than adults. According to the Alzheimer’s Association’s publication Parent’s Guide: Helping Children and Teens Understand Alzheimer’s Disease, the following are common ways children feel after an Alzheimer’s diagnosis has taken place:
In addition they may not know how to verbalize these feelings. Instead, they may express these things in the following ways:
As you spend time with your loved one, you will see changes in them. They may seem sad, become angry, or do things which you find embarrassing. In fact, they will continue to change for the rest of your relationship together. This can be jarring, especially for children, and especially if you don’t see your loved one with great frequency. If this is the case, it will be helpful to discuss with your child what to expect before each visit.
Participating in some of the activities in this kit can provide your children with comfort and power during an experience that can leave them feeling powerless. In addition, here are some things to remember:
As scary as this is for you, imagine how your loved one must be feeling. Their life is changing and will never be the same. As much as you want to get started helping them, it’s important you involve their input. Doing so will ensure person-centered care where the loved one retains their sense of identity and control of their care for as long as possible. (Mast, 2013) For example, if your loved one forgets your child’s name, how would they prefer this be handled? How would you prefer this be handled?
Alzheimer’s Association. (2009). 10 early signs and symptoms of Alzheimer’s.
Fisher, N. J., Rourke, B. P., and Bieliauskas, L. A. (1999). Neuropsychological subgroups of patients with Alzheimer's Disease: An examination of the first 10 years of CERAD data. Journal of Clinical and Experimental Neuropsychology, 21, 488–518.
Kosik, K.S., (2015) Outsmarting Alzheimer’s: What You Can Do to Reduce Your Risk. The Reader’s Digest Association, Inc.
Mast, B. T. (2013). Bringing person-centered care to people with early-stage Alzheimer’s. Generations: Journal of the American Society on Aging, 37(3), 63-65.
Alzheimer’s Association. (2016). Parent’s Guide: Helping Children and Teens Understand Alzheimer’s Disease. [Pamphlet]. Alzheimer’s Association
This kit was put together by a team of people, including:
All material in these activities has been obtained from THE HEALING LIBRARY: ALZHEIMER'S & YOUR FAMILY, unless otherwise noted.