Contents

• Introduction
• The Case Example
• Managing the Practical Aspects
• Managing the Emotional Aspects
• What Formal Help Is There for the Transition?
• Resources

Negotiating the change from caring for people at home to caring for them in a facility has its own steep learning curve and emotional heavy lifting, and that’s the subject of this issue of ASPN. Family caregiving is the backbone of long-term care in the US, and maintaining people with disabilities at home for as long as possible is something both care recipients and caregivers value highly. However, despite heroic efforts on the part of caregivers, many care recipients eventually need institutional care. In 1997, Kemper and Murtaugh estimated that about a third of men and half of women age 65 and older will spend at least some time in a nursing home. The move to assisted living or a nursing home is a decision and process that many families will face, particularly as care recipients age into their 80s.

Family caregiving doesn’t end with the care recipient’s entry into a facility, and making the transition can be difficult not only for the people making the move but for the caregivers. The transition usually brings with it new challenges and stresses for everyone concerned. Schulz and Beach reported in 1999 that caregiving itself is a risk factor for sickness and death, regardless of any other conditions the caregiver may have. In 2004, Schultz and colleagues studied families caring for people with dementia and found that rates of depression among caregivers remained the same before and after placement, while rates of anxiety actually increased. They found that rates for both depression and anxiety were higher among spouses than among other family caregivers, and that caregivers who felt they had poor support from family and friends before placing their relative had a more difficult time with the transition.

If you think about it, community support for caregivers and acknowledgment of their efforts often stops at the door of the nursing home or assisted living. Sometimes family and friends may say, “Aren’t you relieved now that someone is looking after him?” Service providers are paid for services to the care recipient, but not usually for following up with the caregiver. Social workers in residential care facilities can offer support to caregivers, but not all facilities employ them, and their first concern may be the new resident.

We would like you to let the experience of Mr. and Mrs. M spark your thinking about how your agency—or your faith or civic organizations—already helps or might help caregivers through this stressful time. The Ms were financially better off than many families, had done some advanced planning, and in some cases were just lucky, but many of the challenges they faced could not be solved with money, planning, or luck.