Part 4

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Improving Support for Families and Other Caregivers

One of the greatest costs of AD can be the physical and emotional toll on family members, caregivers, and friends of people with the disease. The changes in a loved one’s personality and mental abilities; the need to provide constant, loving attention for years on end; and the demands of bathing, dressing, and other care giving duties in the later stages of the disease can be hard to bear. Many caregivers must assume new and unfamiliar roles in the family, and these changes can be both difficult and sad. Not surprisingly, caregivers of people with dementia spend significantly more time on care giving tasks than do caregivers of people with other types of illnesses.

One of the hardest decisions that many families face is whether and when to place a loved one with AD in a nursing home or other type of care facility. Once this decision is made, families must decide what type of care is best for the person and the family. Many investigators are working to identify strategies that can lead to improved quality of care in various facilities, including adult day care centers, assisted living facilities, continuing care retirement communities, nursing homes, and special care units (separate areas within nursing homes or assisted living facilities designed especially for people with dementia).

Who Are AD Family Caregivers?

Many primary caregivers are family members, and NIA-funded research has shown that the value of informal family care giving of people with cognitive impairment adds up to billions of dollars every year. Who are these family caregivers?

Spouses: This is the largest group of caregivers. Most are older, too, and many have their own health problems.
Daughters: The second largest group of primary caregivers is daughters. Many are married and raising children of their own. Juggling two sets of responsibilities is often tough for these members of the “sandwich generation.”
Daughters-in-law: Many women in this group help take care of an older person with AD. They are the third largest group of family caregivers.
Sons: Although many are involved in the daily care of a parent with AD, sons often focus on the financial, legal, and business aspects of care giving.
Brothers and sisters: Siblings may assume primary responsibility for care if they live close by. Many of these caregivers also are older and may be coping with their own frailties or health problems.
Grandchildren: Older children may become major helpers in caring for a grandparent with AD. Grandchildren may need extra support if their parents’ attention is heavily focused on the ill grand-parent or if the grandparent with AD lives in the family’s home.

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