A Starter Kit for Families Living with Alzheimer’s

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The process of knowing and communicating what health care treatments you want as you face the end of life is complex. Typically the process unfolds over time as a patient’s medical condition changes, and it requires not one, but many discussions with treating physicians and family members. This process is even more complex for people with Alzheimer’s disease or other cognitive impairments.

The Conversation Project, a public information campaign whose mission is to ensure that people’s end of life wishes are expressed and honored, has now issued a starter kit specifically written for families living with Alzheimer’s. It provides suggestions for step-by-step discussions to enable patients and their families to discern the type and intensity of treatment someone with Alzheimer’s wants as he or she nears the end of life. The kit is free, and can be downloaded here. It offers some excellent suggestions on how to acknowledge the loss of mental capability as well as how to start a conversation on health care decisions.

One of the difficulties of mapping out what kind of care you want when you have been diagnosed with Alzheimer’s is that the disease does not have a predictable course. Some people die quickly following a diagnosis, some live for another 20 years. Some experience hallucinations, wandering tendencies and/or personality changes; most do not.  The starter kit assumes families have accurate information about the course of the disease.  Given the stigma and misinformation associated with Alzheimer’s, it should be emphasized that patients and families will benefit by speaking with the treating physicians and doing their own research so their assumptions about the future and likely treatment issues are as accurate as possible.

A second challenge can be unifying the family around a treatment decision, especially if the patient is unable to participate. The Conversation Project Tool kit offers great advice on how to reach consensus on a course of action when the patient has lost the ability to participate in the decision making.

Even with the benefit of detailed research and family agreement on a course of action, medical situations may arise that were not considered during the course of earlier conversations.  The starter kit discusses the need to have someone to serve as the health care proxy for these situations.  The starter kit from the Conversation Project is a unique tutorial, reflecting the special needs of families living with Alzheimer’s. It is well worth examining if you need to have “the conversation” with someone with cognitive impairment.

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