Background

When providing care for a person with memory loss, you may face difficult challenges as you make decisions for everyday care. Many families face challenges when their loved one’s decline in their ability to carry out daily activities, make judgments, and communicate needs and preferences. The Margaret Blenkner Research Institute (MBRI), of the Benjamin Rose Inst on Aging, has conducted several studies to understand everyday decisions made by people with memory loss and the family members who care for them.

Can people with memory loss discuss care wishes?

Many family caregivers doubt that their loved ones with memory loss can accurately and consistently provide answers to questions about their care preferences. On the contract, MBRI studies show that people with mild to moderate memory loss are able to communicate preferences for daily care.

Research suggests that people with memory loss can:

• Communicate preferences for care
• Consistently express choices over time
• Make informed care decisions

Why should families encourage discussion about daily care?

Day-to-day care decisions need to be made all the time. These decisions, such as deciding when and what to eat, what to wear, or who should come for a visit, have a huge impact on s-our daily caregiving experience. Although decisions about medical treatment, end-of-life care, and nursing home placement are also difficult, they are not made on a daily basis.

Research suggests that involving a person with memory loss in daily decision-making may lead to:

• Less depression for the person with memory loss
• Less depression for the family caregiver
• Enhanced well-being and quality of life for the person with memory loss, even as abilities decline

What can you do?

Ask your loved one how important certain care values are to him or her, including:

• Doing things with other people Being in touch with others in case of an emergency
• Being with family and friends Being safe from crime
• Having time to self, Keeping the same doctor(s)
• Coming and going as he or she pleases Not being a physical, emotional, or financial burden
• Doing things for self Having reliable help
• Having something to do, Allowing caregiver to balance care responsibilities
• Making own financial decisions with other aspects of their life
• Feeling safe in the home even if it restricts activities

To be sure you understand your loved one's care values and preferences:

Ask early, ask often. As early as possible, try to understand the preferences of the person with memory loss before you have to start making difficult day-to-day care decisions. Involving your relative in ongoing decision-making and incorporating preferences into daily care could help minimize your long-term strain and preserve your relative’s independence.

Consider past hobbies, activities, and behaviors. Research shows that many people with memory loss would like to continue typical, everyday activities that have been part of their lifestyle. Suggest modifying prior hobbies and activities that your loved one has enjoyed (e.g., show travel films to a person who enjoyed traveling) and include these activities in the day-to-day schedule.

Empower your relative to make choices. Think of your relative as a consumer of daily care. I loved ones with memory loss can take an active role in choosing another person to make specific decisions - about finances, health care, living arrangements, and social activities - on their behalf in the event they are no longer able to do so. They can also choose a family member, friend, or service provider to help with specific tasks (e.g., cooking, laundry; bathing, toileting).

Avoid assumptions about your relative’s preferences for care. Even people who have lived together for man\ sears do not understand family members’ preferences. Rather than making assumptions, ask your loved one what is most important to him or her in order to clarify misunderstandings and alleviate your caregiving stress.

Involve your loved one in day-to-day decisions about:

• Being physically active         Choosing places to go
• When to bathe                      What to do in spare time
• What clothes to wear            Visiting with friends
• When to go to bed                  Participating in spiritual/religious activities Using support services(e.g., in-home care, adult day services)
• What to spend money on