Caring for a relative with memory loss can be both challenging and rewarding.
Relatives who stay home can live in a familiar environment while staying engaged in existing family and social networks. But providing 24-hour care can be exhausting, expensive, and sometimes impossible. How can you extend your relative’s ability to stay home—and your ability to manage?
#1: Rely on your network
Your support network matters. In our consulting practices, we have seen that people with large extended families or friendship networks that are available to help are more likely to be able to sustain the person at home longer. Many of us are uncomfortable accepting care, but family and friends often want to help and are not sure how to do so. Giving them specific tasks and roles can make your job easier and allow them to feel helpful.
#2: Create a calm, uncluttered environment
A calm, consistent environment prevents agitation. Declutter the environment, especially in areas where your relative bathes or eats or spends a lot of time. While you don’t want to make the environment sterile, you do want to simplify it. Reduce loud noises and potential agitators like violent or upsetting tv shows.
#3: Prevent boredom
Filling time is difficult for people with memory loss. Not knowing what to do or how to fill time can cause anxiety or depression and eventually agitation. You know what he or she has enjoyed in the past – birdwatching, model trains, knitting. Not all of these things may be possible, but you can find books or videos about these subjects, or start a conversation on a favorite topic.
Finding activities for your relative also can be very challenging. This list of 101 activity ideas from the Alzheimer’s Association might be helpful.
Sitting for 4 or 5 hours at a time without getting up can lead to stiffness, which can lead to agitation or irritability. Be sure your relative gets out of a chair or wheelchair and moves around regularly. Research shows that a 1-hour walk three times a week can improve thinking skills in people with vascular dementia. There’s nothing to lose by trying!
#4: Observe and reflect
Anxiety, aggression and anger are easier to prevent than defuse. When things go south, start looking for triggers. What caused the situation? How did it escalate? When is your relative in a good mood and cooperative? Use a behavior log to help you track and reflect on the possible causes of behaviors that are challenging so you can understand and try to prevent them. We believe that many of the most challenging behaviors may be minimized when caregivers learn how to identify root causes and try strategies that are known to help some people with dementia much of the time. Our book Coping with Behavior Change in Dementia: A Family Caregiver’s Guide offers many ways to avoid agitation during meals, bathing, going to the bathroom or when your relative is bored or upset.
#5: Find and use respite services
In our experience, the families that have the greatest success maintaining relatives at home rely on a combination of family care and respite services. Yes, a family member helps provide or supervise care—with extra assistance from an adult day program, a home caregiver, or a respite care program.
An adult day care program specializing in people with memory loss gives the caregiver time alone at home and offers socialization and stimulation for the relative with memory loss. Some include medical services as a key component, while others are “social models” that emphasize stimulation and socialization. The National Adult Day Services Association can help you find and evaluate local programs.
Having a home companion shoulder a few hours of care a week means you can enjoy free time away from home or do those errands you never get to. It also helps your relative get used to other people providing care and companionship—which can smooth an eventual transition to residential care, when needed. Options for home care range from national chains like Home Instead to local organizations and even individuals who work as private caregivers.
24-hour residential respite care may be offered for a few days up to a month by assisted living communities, small group homes, and skilled nursing homes. We’ve seen families use this option when they are exhausted, when there is a family emergency or out-of-town event, or as a way to test out how their relative does in residential care. This too can ease the way to a permanent move to residential care, if needed, for both the caregiver and the person with memory loss.