More than 30 million Americans currently provide care for elderly relatives, many of whom have Alzheimer's disease and may be unaware of any problems, resistant to care, and perhaps even irritable and unreasonable.
Long-distance caregivers constitute a large and growing group in this country. There are now an estimated five million caregivers living an hour or more away from the parent or other elderly relative they are caring for. These long-distance caregivers, about 60 percent of whom are women, have their own family, household, and work concerns.
In this Health Alert, Dr. Peter V. Rabins, world-renowned expert in geriatric psychiatry and medical editor of The Johns Hopkins Memory Bulletin, provides advice to a long-distance caregiver struggling to help an aunt with Alzheimer's disease.
Q. My aunt has been given a diagnosis of Alzheimer's disease and it is obvious that she will need care. I live 1,500 miles away. What should I do first?
A. The key here is common sense and ingenuity. First, you will need to learn everything you can about Alzheimer's disease. Do your research and understand all aspects of Alzheimer's disease so you can respond appropriately to day-to-day problems and plan for the future.
Second, assess how much assistance your aunt currently needs in carrying out Activities of Daily Living, or ADLs. These include such activities as bathing, dressing, and going to the toilet. In addition, you need to know how much help she will need to carry out Instrumental Activities of Daily Living (IADLs) -- activities such as meal preparation, shopping, housekeeping, and doing the laundry.
Finally, find out about all the Alzheimer's disease caregiving resources currently available in your aunt's community. They often include support groups, special classes, adult day care, and funding for adaptive equipment. You will be able to assess most of these needs during your initial visit with your aunt.
Be observant about health and safety issues. Does she seem to be ill, debilitated, depressed? Is she eating properly? Are friends and neighbors coming around to visit and help? Is the house clean? Is she handling her finances competently?
You should also call or schedule a visit with your aunt's primary-care physician for an update on her Alzheimer's disease and other medical issues you need to be aware of. Additional information can be gathered from your aunt's close friends, clergy, and relatives who have had close contact with her over the years.
Once you have assessed the situation, develop a plan of care based on what your aunt's primary needs are, who will provide assistance, and what community resources are available. Begin by calling the local chapter of the Alzheimer's Association. Most chapters have volunteer-run Alzheimer's disease programs, while others have paid, professional staff. All chapters should be able to tell you about good Alzheimer's disease programs in the area.
As the Alzheimer's disease worsens and your aunt becomes totally unable to care for herself at home, providing care will be even more challenging. Before that time comes, think about at what point you will no longer be able to provide the necessary level of home care. You should already be doing your research into nursing homes in your aunt's community, or in your own hometown.
