"If there's one thing worse than Alzheimer's, it's ignorance of the disease." -- Marty Schreiber
Palliative Care, Hmmm….
Recently I was most pleased to learn that “My Two Elaines” was chosen by the DementiaBook Club in the United Kingdom @
as its April reading selection. Also, Diverse Alzheimer’s @
, an online caregivers community in the UK, featured my book in a Twitter discussion that drew comments from families and health professionals throughout the UK.
We all realize Alzheimer’s knows no boundaries, geographical or otherwise. I was happy to learn we are reaching caregivers and Alzheimer’s professionals overseas. It proves we are not alone in our effort to learn, cope and survive as we care for our loved ones.
One of the thought-provoking topics during the Twitter discussion focused on the benefits of palliative care for those with Alzheimer’s. Several of the caregivers said they believe palliative care is extremely important and should be offered or provided routinely, even in early stages of Alzheimer’s.
I believe we can learn from these caregivers in the UK. Palliative care is something we should be aware of and ask for on behalf of our loved ones who have Alzheimer’s.
As I understand it, palliative care is designed to help the patient live his or her best life possible – not necessarily their longest life possible. It is care designed to improve the quality of life for both the patients and their families.
The U.S. Centers for Disease Control and Prevention [CDC] defines palliative care as treatment to relieve pain and control symptoms of chronic illness when there is no reasonable expectation of a cure. It focuses on the whole person, encompassing body, mind, and spirit to enhance comfort and preserve dignity.
According to the National Institutes of Health [NIH], Palliative care is intended for anyone living with a serious illness, such as heart failure, pulmonary disease, cancer and dementia. It is available in hospitals, nursing homes, specialized clinics or at home, providing medical, social, emotional and practical support.
Palliative care focuses on the all symptoms of a disease, both physical and emotional. By treating matters such as depression, anxiety or fatigue, palliative care can help patients better tolerate medical treatment. Palliative care, often delivered via teams of specialized physicians, nurses, social workers and chaplains, provides support for family caregivers as the disease progresses. They also can help them make difficult decisions about feeding or caring for their loved one.
If you are thinking palliative care sounds a lot like hospice care, you are correct – there definitely are similarities. But unlike hospice, which is generally thought of as end-of-life care, palliative care can be helpful at any stage of illness and often is most effective when it begins as soon as a patient is diagnosed, according to the NIH. And, as a patient nears the end, palliative care can transition to hospice or the palliative team can shift to comfort care, designed to help or sooth those who are near death.
Helen Findlay, a UK health professional who cared for her late father and took part in the Twitter discussion, is an advocate for palliative care for those with Alzheimer’s. In one of her posts, she said: “This is something I have been working for over the last 14 years. The difference that palliative care can make for people with dementia & families is little understood or appreciated. Needs to change.”
A Twitter post from another UK caregiver: “I like the recommendations I am hearing from progressive palliative care specialists that people getting a #dementia or #Alzheimers diagnosis should immediately be told about & allowed to choose to have access to palliative care.”
What we can learn from these UK caregivers is similar to the message in a book many caregivers have found to be helpful for themselves and their loved ones with dementia.
In his book “Being Mortal: Medicine and What Matters in the End” (Picador 2014), physician Atul Gawande writes about his personal experience with his father’s illness and death. Gawande offers perspective as both a son and a physician about dilemmas he faced over treatment and comfort care as his father’s health declined. He has become an advocate for raising awareness of the benefits of palliative care as our loved ones near end of life.
One thing I have learned during my journey through Alzheimer’s with Elaine is that we as caregivers should look beyond the immediate physical health of our loved ones and focus on their emotional needs and overall comfort as well. Only then can we help them live their best lives possible – for as long as possible.
For questions or more information about Alzheimer’s and services or programs, visit
or call the Alzheimer’s Association 24/7 Helpline at 800-272-3900.
Marty is the primary caregiver for his wife Elaine, for whom his book is named. He compassionately promotes the value of learning about Alzheimer's and caregiving via personal appearances and serving as a media source. You'll enjoy his honesty and even his humor.