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CAMBRIDGE, Mass. | Families caring for loved ones with cognitive impairments face special challenges when it comes to managing their end-of-life care. Often caregivers of patients with Alzheimer’s disease and other forms of dementia are left to make critical decisions on their own, as the afflicted are no longer able to speak for themselves. This can leave caregivers in the dark feeling isolated, guilty and uncertain about the decisions they are making on their loved one’s behalf.
Alleviating some of this burden is the goal of The Conversation Project, a public engagement campaign and national nonprofit organization with the mission to ensure that everyone’s end-of-life care wishes are both expressed and respected — by encouraging communication early and often.
At the heart of the project is the Conversation Starter Kit, a free downloadable step-by-step guide that helps individuals and families have “the conversation” about their preferences for end-of-life care. Once the Starter Kit became widely used by health care professionals and families, The Conversation Project began receiving requests for a guide specifically designed to help those affected by Alzheimer’s disease and other forms of dementia.
“We responded eagerly because we, too, have had personal experiences caring for family members with Alzheimer’s disease,” says Ellen Goodman, Pulitzer Prize-winning journalist and founder of The Conversation Project. “We appreciate the difficulty and the importance of having these conversations and collaborated with caregivers, social workers, geriatricians and experts to bring forth a guide to help ease families into this topic. We hope this new resource helps caregivers begin these talks in the early stages of decline. It’s always too soon — until it’s too late.”
Goodman founded the nonprofit after serving as caregiver to her mother with Alzheimer’s disease for many years. She realized that while she and her mother had talked about everything, they never discussed how she might want to spend her final days. With each passing decision, Goodman became unsure if she was doing right by her mother and upholding what her wishes would have been. This new resource hopes to change that fate for families in similar situations.
The new Starter Kit created specifically to address the issues associated with Alzheimer’s disease and other forms of dementia is the first of its kind and is now available free for download on the organization’s website. It provides questions that can help caregivers navigate the approach to the conversation based on the cognitive level of the impaired, and can also guide decision making even if the illness is so advanced that the loved one has lost the ability to communicate.
“Alzheimer’s disease is a terminal illness, however unlike cancers, it often does not get the care and attention that it deserves in the medical community,” says Dr. Susan Mitchell, M.D., M.P.H., Senior Scientist and Director of Palliative Care Research at Harvard Medical School and contributor to the new resource. “The misconception is that it’s a condition of the brain that causes memory loss, but as the dementia progresses, it ultimately affects your entire body – for example impairing the neuromuscular control needed to swallow properly and or motor control needed for walking. It’s so important for patients and families to understand what to expect in the natural progression of this disease as they think about their goals of care and treatment options, and that’s where this new resource can be invaluable.”
It is estimated that as many as 5.1 million Americans may have Alzheimer’s disease, and the incidence of the disease is rising in line with the aging population. The number of people age 65 and older will more than double between 2010 and 2050 to 88.5 million according to the U.S. Census Bureau. Currently, there is no cure for Alzheimer’s disease and researchers are looking for new treatments to alter the course of the disease and improve the quality of life for people with dementia.
“Patients and their caregivers are not well supported despite the number of individuals being diagnosed with the disease coming and present,” says Barbara Moscowitz, MMSW, LICSW, at Mass General Hospital, a contributor to the new Starter Kit. “I am thrilled that The Conversation Project is giving social recognition to this unique and growing population because they need a different approach to handling end-of-life care. The new Conversation Starter Kit approaches this topic in a nonthreatening and nonmedical way that makes it easier for families to absorb the information and make informed decisions. In my line of work I don’t want to give out a million brochures – I want to give out the right information. I will use this resource without hesitation.”
About The Conversation Project:
The Conversation Project, co-founded by Pulitzer Prize-winner Ellen Goodman and launched in collaboration with the Institute for Healthcare Improvement (IHI), is a public engagement campaign with a goal that is both simple and transformative: to have every person’s wishes for end-of-life care expressed and respected. Too many people die in a manner they would not choose, and too many of their loved ones are left feeling bereaved, guilty, and uncertain. The Conversation Project offers people the tools, guidance, and resources they need to begin talking with their loved ones about their wishes and preferences, before a medical crisis – “at the kitchen table,” not in the intensive care unit.