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Post-Diagnosis Guide for Alzheimer’s Patients and Families

Encourage family caregivers to make it a priority to get enough sleep, exercise, eat right, and set aside time to do something they enjoy that can take their mind off the source of their frustration or grief.
Encourage family caregivers to make it a priority to get enough sleep, exercise, eat right, and set aside time to do something they enjoy that can take their mind off the source of their frustration or grief.

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July 18, 2012

When individuals receive a diagnosis of Alzheimer's disease or other dementias, they and their families typically have the same basic question, "What now?"

Aside from pharmacological and non-pharmacological treatment plans you or another medical professional will prescribe, Alzheimer's patients and their families will need to create their own plan regarding end-of-life matters. You can help them prepare for the road ahead by guiding them through the following five key steps.

Download a print-ready PDF version for your clients

  1. Complete the Five Wishes Document

    The Five Wishes document allows individuals to communicate their final wishes regarding end-of-life care to family members and doctors. Those who have received a diagnosis of Alzheimer's disease or other dementias should begin to think about and discuss their preferences for care and end-of-life issues as soon as possible. It's best to broach the subject when the individual with dementia can still make his or her wishes known and the family has plenty of time to plan for the road ahead.

    Most people tend to avoid such sensitive subjects for a variety of reasons—"I don't want to upset anyone," or "I'm waiting for the 'right time' to bring it up." But with the right approach and these end-of-life discussion tips, families can tactfully talk about the affected individual's five wishes and have a productive conversation.

    Discussing a loved one's wishes ahead of time can also help prevent conflict among family members when it comes time to make decisions on a loved one's behalf. Instead of arguing about what they think Mom or Dad would have wanted, family members will be able to eliminate the guesswork and honor their loved one's wishes in confidence.

  2. Establish a Living Will and Health Care Power of Attorney

    Encourage your dementia patients to create the appropriate legal documents, known as advance directives, which allow them to detail their decisions about end-of-life care in advance. Individuals showing early signs of dementia should establish advanced directives as soon after a diagnosis as possible while they still retain decision-making abilities.

    There are two types of advance directives:

    Living Will – A set of written instructions specifying preferences about the types of life-prolonging medical treatments a person does or does not want to have. According to the Alzheimer's Association Ethics Advisory Committee, there is little, if any, benefit to treatments that attempt to extend the life of someone in late-stage Alzheimer's. The most advisable treatments are those that make the individual as comfortable and pain free as possible. If your Alzheimer's patients wish to follow that advice or specify any other preferences, they will have to document those wishes in a living will in order for family members and doctors to honor them.

    Health Care Power of Attorney – A legal document that appoints a trusted individual to make decisions for the Alzheimer's or dementia patient with regard to medical care, and it becomes effective when the individual can no longer communicated effectively or coherently with others. Learn more about what individuals with dementia should know regarding appointing a health care power of attorney and what medical wishes they cover.

  3. Engage in Memory-Sharing Activities

    Sharing and preserving cherished family memories through activities like creating a memory book, telling and recording stories, continuing traditions or simply spending time together will ensure the contribution that individuals with Alzheimer's or other dementias have made to their family heritage remains intact. You can find ideas and resources to share with Alzheimer's families about capturing and leveraging memories at www.HelpForAlzheimersFamilies.com.

  4. Explore Alzheimer's and Dementia Care Options

    Make sure individuals with dementia and their families understand the progressive nature of Alzheimer's and the characteristics of each of its stages so they can plan accordingly for care.

    When deciding on the best plan of care for a loved one with Alzheimer's, family caregivers will need to take into account their loved one's wishes, their own caregiving commitment, finances and, of course, the condition of the individual with dementia. A broad spectrum of care options is available for individuals with end stage Alzheimer's ranging from in-home care services to hospice care.

  5. Manage the Emotional Stress

    Alzheimer's disease, often referred to as "the long goodbye," is an emotionally stressful experience for affected individuals and their loved ones. Sadness, anger, frustration and grief are all natural feelings to have and need to be expressed—in a healthy way. Talking with family members, friends, members of an Alzheimer's support group, or a professional counselor can help individuals work through the difficult emotions they may experience.

    For family caregivers, taking time for self-care is also key to managing emotional stress. Encourage them to make it a priority to get enough sleep, exercise, eat right, and set aside time to do something they enjoy that can take their mind off the source of their frustration or grief.

Download a printable PDF version of these 5 Key Steps to Alzheimer's End-of-Life Planning to give individuals with Alzheimer's or other dementias and their family caregivers.

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