Be Prepared – A comprehensive program for families of people challenged with Alzheimer’s

Hope.  Meaning. Resilience.  These are essential elements to ensure personal and communal wellbeing.

The Need

With any life threatening illness family members hesitate to raise issues related to impending end-of-life. The need to understand the patient’s choices is offset by fears of causing the loved one distress and by their own fears and ensuing avoidance.

Unfortunately, lack of communication about end-of-life lowers patient wellbeing before death and increases chances of depression and other pathology among the survivors (Wright – “association between end-of-life discussions, patient mental health, medical care near death and caregiver bereavement adjustment” Jama 2008) Family members must then make critical decisions without guidance, causing them to feel isolated, guilty and uncertain about the choices they are making on their loved one’s behalf.

Families of patients with dementia face even greater challenges regarding management of their loved one’s palliative care, and of families’ ability to continue their daily lives. The patient loses ability to communicate about complicated end-of-life scenarios that are predictable with dementia.

By encouraging early (and repeated) meaningful conversations, this program ensures that palliative-care wishes are expressed and respected. This conversation will decrease feelings of uncertainty and heighten the probability that one’s wishes are fulfilled, increasing wellbeing at end of life (Temmel – “Early palliative care for patients with metastatic non-small-cell lung cancer” New England Journal of Medicine 2010) Patients and their families will greatly benefit from this project during the patient’s lifetime and after he or she passes away.

Program Goals

  1. Instill hope of wellbeing, for the duration of the disease, in patients suffering from Alzheimer’s and their family’s
  2. Ensure Alzheimer patients the opportunity to experience palliative care and end-of-life in dignity, in accordance with their personal values (e.g. type of medical care– who makes decisions- where; quality-of-life wishes; wishes for post-mortem…)
  3. Provide Alzheimer patients’ families with the opportunity to fulfill their loved one’s wishes and decrease families’ feelings of uncertainty and despair during their loved-one’s life and beyond
  4. Serve as a pilot program to be evaluated, and duplicated countrywide to impact national resilience.

The Conversation Project – What’s it all about?

CP provides family members with tools that enable them to initiate and conduct discussions about quality of life, health, palliative care, end-of life wishes as well as tools to process the emotional challenges entailed.

At the heart of the project is the kit that helps individuals and families have “the conversation” about their preferences for end-of-life-care.  “The Conversation Project” was established in the USA by Pulitzer Prize winning columnist, Ellen Goodman. Life’s-Door was chosen as the exclusive organization to facilitate the project in Israel. We have adapted the program socially and culturally to make it suitable for Israeli society.  To date the program has been successfully implemented for many including the National Insurance of Israel (Bituach Leumi), Hadassah Hospital, the Clalit HMO and the Israeli Society for Medical Education.

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