What Do Older Adults and People with Disabilities Need?

Worries, fears, plans, and program desires are revealed in a survey of Washington State residents who are aging and/or living with disabilities, and their caregivers. The survey reveals that people know they will not always be able to care for themselves and their present homes. They worry about isolation, boredom and lack of meaningful activities when they can no longer drive. They worry about not being able to find or afford trustworthy caregivers in the home. They fear being alone and needing help in an emergency – and they fear losing their homes, independence and privacy if they need assisted living. They long for closeness to their families – and they fear both burdening them and being neglected or exploited by them. Most of all, they fear the loss of control, independence and ability to make their own care decisions if their cognitive abilities and memories decline. Respondents would like help with home modifications for safety, with routine home, yard maintenance, and meals, and with transportation to both needed appointments and community activities when they can no longer drive. They would like to choose and pay for their own caregivers in their own homes, keep their pets near them, and have enough in-home care hours to assure safety. They would like respite, support and education for family caregivers. They would like advocates to assist in their care decisions, particularly assisted living decisions, and people to help them pay bills and manage medical paperwork. They would like to be part of family, friend, and community networks of care.