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Valencia Family Resource Library Guide: Alzheimer’s & Your Family

Welcome

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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. 

What is Alzheimer's?

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)

Some Warning Signs

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:

  • Memory loss that disrupts daily life
  • Challenges in planning or solving problems
  • Difficulty completing familiar tasks at home, at work, or at leisure
  • Confusion with time or place
  • Trouble understanding visual images and spatial relationships
  • New problems with words in speaking or writing
  • Misplacing things and losing the ability to retrace steps
  • Decreased or poor judgment
  • Withdrawal from work or social activities
  • Changes in mood and personality

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. 

How to Support Your Child

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.

Common Reactions from Children

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:

  • Sad about how the person is changing
  • Curious about how people get the disease
  • Confused about why the person acts differently or doesn’t recognize him/her
  • Frustrated by the new ways they need to behave, like repeating words or phrases
  • Guilty for resenting the time and resources the person requires from the family
  • Afraid of the different ways the person may act
  • Jealous of the additional time and attention given to the person
  • Worried that others they love may get Alzheimer’s
  • Embarrassed to have friends or visitors over to the house if the person is home
  • Unsure how to behave around the person

In addition they may not know how to verbalize these feelings. Instead, they may express these things in the following ways:

  • Withdrawing from or losing patience with the person with Alzheimer’s
  • Expressing physical pain, like a stomachache or headache
  • Performing poorly in school • Spending more time away from home
  • Not inviting friends over to the house anymore
  • Arguing more with others, especially those giving care to the person with Alzheimer’s 

Prepare for Differences in Your Loved One

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:

  • Just because your loved one may cry, become angry, or forget who you are, it does not mean they don’t care about you anymore.
  • Caregivers can also be sad, frustrated, or short-tempered because of caring for a loved one with Alzheimer’s. Reassure your child that you, too, still love them. 

How to Start Caring for your Loved One

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? 

Resources

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 dataJournal 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’sGenerations: 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 

The Healing Library

This kit was put together by a team of people, including:

  • David Moorhead, children’s librarian at the Lewiston (Maine) Public Library
  • Bonnie Thomas, a licensed children’s counselor specializing in art and play therapy
  • Megan Emery, guide author and Chattanooga Public Library experience designer and coordinator
  • Kirsten Cappy, a children’s literature advocate and owner of Curious City

All material in these activities has been obtained from THE HEALING LIBRARY: ALZHEIMER'S & YOUR FAMILY, unless otherwise noted.

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