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Involving Your Loved One in Decision Making

Thanks to modern medical procedures, research, and public awareness, people with dementia are being diagnosed earlier than in the past. As a result, people with memory loss have the opportunity to learn about their symptoms and diagnosis, and prepare for future changes in their ability to function.
If you are caring for a person with early-stage dementia, you may be inclined to make decisions for your loved one. However, your loved one may well be able to make his or her own decisions and voice preferences for care.

Families may believe that their relative with dementia is unable to state consistent preferences, or that the person simply does not want to be bothered with making decisions. Often, well-meaning family members intervene because they think they are helping their loved one. Research has shown, however, that many people with dementia prefer to be involved in decision making, and that people with mild-to-moderate dementia are able to consistently express their preferences for care.

These preferences include decisions about keeping the same doctor, asking for help from certain family members or friends, and wanting to feel useful. People with dementia are also capable of choosing who they would like to make decisions for them if they are unable to make decisions themselves. Involving your loved one in routine daily care decisions, such as deciding what to wear, eat or when to get up, can be helpful. Many studies show that people with dementia who are involved in these daily decisions say that their quality of life is better, they feel less depressed, and they feel less strain in their relationships with their caregivers.

Your loved one’s physician or other health professional may assume that you are the person most able to answer questions on your loved one’s behalf. Although well-meaning practitioners may believe family caregivers are the most knowledgeable about the person with dementia, in actuality the best source of information remains the person himself.

Be sure to maintain good communication with the person in your care. Make sure you understand his or her values and preferences for care, maintain healthy activities, and build a network of support that can be used now and in the future. If you need help, there are programs available to help caregivers maintain a good relationship with the person in their care, such as the SHARE program (Support Health Activities Resources & Education) from the Benjamin Rose Institute on Aging, which helps individuals with dementia talk about their preferences so that their wishes are respected throughout the course of their care.

Additional resources
Information on SHARE and other evidence-based programs supporting caregivers: www.benrose.org/research
Tips for communicating with individuals with dementia: http://caregiver.org/communication-dementia