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Dementia

Seek Joy When Caring for Those With Dementia

Don’t forget to have fun with your loved one who has dementia.

In this holiday season, my coauthor, Maureen O’Connor, and I want to make sure that you spend time having fun with your loved one who has dementia.

In addition to making sure that you are taking care of yourself, it is also important for you to nurture the connection you have with your loved one. You and your loved one may find that your relationships with others will change after a diagnosis of dementia, with some relationships remaining strong and others weakening. About one-third of people with dementia say that they have lost friends following a diagnosis and many people with dementia and their caregivers feel uncomfortable disclosing a diagnosis of dementia to friends—and even family. There are, however, also opportunities to form new friendships. For example, you may meet other people who are going through the same circumstances and new friendships might blossom from these meetings. Through it all, you and your loved one will need to navigate the relationship you have with each other.

The experience of giving and receiving care in dementia occurs in the context of a longstanding relationship that predates the onset of dementia. Before the dementia, you have been the child, sibling, spouse, or friend of your loved one. But changes in memory, language, and behavior can make it more difficult for you to feel connected with them. In the context of dementia, the relationship between you and your loved one will change. Sadly, caregivers and their partners with dementia often become so focused on the illness, the changes it brings, and chores that need doing, that they forget to stop and enjoy one another’s company. This loss of enjoyment can make it difficult for you and your loved one to feel connected to each other, and may lead to increased depression and anxiety for both of you. Caregivers who lack a strong connection to their partners may experience greater burden compared to those who maintain a healthy connection. In addition, persons diagnosed with dementia display fewer behavioral problems when they spend time doing enjoyable activities with their loved ones. The connection between you and your loved one continues to be very important throughout the disease course. One of the best ways to remain connected to your loved one is to have fun! Taking the time to engage in pleasant activities as a way to remain connected is important to your relationship—and can be fun for you both.

Sometimes the changes that occur with dementia make it more challenging or impossible for you and your loved one to do some of the things you used to do for enjoyment. You may need to think creatively about what you can do to take pleasure in each other’s company. In future posts we review some specific ideas for activities you can do with your loved one. Here we discuss some general issues to consider when thinking about pleasant activities.

The first step is to select an appropriate activity. In the early stages of dementia, your loved one may be able to do many of the same things they did before their diagnosis. But over time, changes in memory, thinking, behavior, and bodily function may make those old activities less enjoyable and more of a struggle. In the middle stages of dementia, your loved one may require direct assistance to engage in some activities and may not be able to do others at all. In later stages, your loved one should still be able to engage in some pleasant activities, but they must be relatively simple and require fewer choices. With a little creativity and thought, you will be able to modify old activities to fit new skill levels or find appropriate new activities to encourage changing abilities and interests throughout the disease course.

To start, think of all the things your loved one had been interested in before their diagnosis of dementia. What were their hobbies? What did they do for work? What did you do together? Then brainstorm ways to modify old activities as needed to fit new skills. For example, maybe you used to play bridge with your loved one until it became too difficult for them to keep up. Now it might be fun to sit together and enjoy each other’s company while sorting cards into categories.

There are also opportunities to engage in new activities. Perhaps your loved one never showed an interest in artistic expressions, like drawing or painting. Maybe now is the time to explore painting by numbers or visiting a museum to see if one of these activities is something that you can both enjoy.

© Andrew E. Budson, MD, 2018, all rights reserved.

References

Budson AE, O’Connor MK. Seven Steps to Managing Your Memory: What’s Normal, What’s Not, and What to Do About It, New York: Oxford University Press, 2017.

Budson AE, Solomon PR. Memory Loss, Alzheimer’s Disease, & Dementia: A Practical Guide for Clinicians, 2nd Edition, Philadelphia: Elsevier Inc., 2016.

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