Dear Friends,

There are many challenging crossroads in the Alzheimer’s journey. One of the most difficult is making the decision to place a relative in a residential care facility. At the New York City Chapter we provide support and information so that families can make an informed decision about when to place a relative, understand the complex process, and learn how to evaluate a home for persons with AD or a related dementia. We hold a monthly meeting, “Easing the Transition from Home to Nursing Home” to educate and empower caregivers to become good advocates for their relatives during the placement process and while they are in nursing homes.

The whole subject of nursing home care is fraught with powerful feelings; confusion, sadness, profound guilt, relief, failure, and fear of facing the end of life that is symbolized when older people enter residential care. The range of feelings that most family members feels is normal. Who wouldn’t have these feelings under the same circumstances? I have always counseled family caregivers that placement in a nursing home is not a failure of caregiving. Caregiving does not stop at the nursing home door. Your role changes as you become more of a care manager, an advocate and a facilitator of good care, rather than providing the hands on care.

Families facing nursing home placement also feel completely unprepared to face the labyrinth of forms and applications they have to fill out. Figuring out how the care will be paid for is complicated and scary. The whole process can make one feel helpless and inadequate to the job.

Further complicating the issue are the horror stories about poor care, or financial mis-management that one reads in the newspaper with some regularity. Yet, there are many homes that are providing good care that don’t appear on the front pages. Nursing homes do not have a positive image in our culture. For many persons caring for a relative with AD, nursing home placement is seen as the option of last resort. Yet we know that for many individuals, (especially those with no caregivers, or elderly and ill caregivers who cannot manage the responsibility any longer) nursing homes provide a safe, stable environment where their basic needs, and nursing and medical needs will be better met.

This Chapter has always been a champion of good care for persons with AD – in whatever setting they find themselves – at home, in adult day care, assisted living facilities, nursing homes, hospitals or hospice programs. We have been fortunate to have a dedicated, talented staff person, William Senders, whose job is to focus on improving residential care for persons with dementia. We have been fortunate, too, to benefit from several Department of Health dementia care grants that let us develop new ideas, test them out in the real world, and evaluate the outcomes. In partnership with many nursing and health care centers across the city we have created innovative approaches to nursing home care that change the old “institutional” approach to a more caring, “person-centered” approach. Our Alzheimer’s Association Safe Return^® program has been very successful in enrolling the residents in over 20 homes throughout the five boroughs.

We have strong community partners in our advocacy efforts…working together to ensure that government agencies, and the legislature are doing everything they can to ensure superb care for persons with dementia.

This summer we commissioned a report on Dementia Care in Nursing Homes: The Chapter’s Role, completed by Rachel Albert from the Columbia University Schools of Social Work and Business. One of her findings was that some people in the nursing home industry perceive the NYC Chapter as antithetical to their interests, and they don’t see the Chapter as a resource for information and guidance on dementia care. Whether or not this perception is correct, we are taking it seriously and are meeting to develop some new projects as we move forward to improve the care for persons with dementia across the continuum of care.

We understand this is not an easy decision. If you have a question about nursing home or residential care, we are here to help. Call our 24-hour Helpline at 800-272 3900, look for help on our Web site, or to find out details about the monthly education meeting, “Easing the Transition from Home to a Residential Care Facility.”

— Jed Levine
Executive Vice President,
Director of Programs & Services

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