Dementia- When Does the Dying Process Begin?

By Barbara Karnes

Dear Barbara, what do you think about a patient who has been in hospice for months. He has dementia. I thought when patient’s got on hospice they would die soon yet I hear there are patients here in this nursing facility that have been here a year or more. I heard a saying, “dementia patients forget to die”. Is that true?

I'm glad you reached out to me about dementia at end of life. I'll start by saying I have a booklet How Do I Know You?, which goes into detail about how dementia at the end of life is different from other diseases. You may find it helpful.

I have not heard the statement "dementia patients forget to die" and I do not agree with it. They die, it's just that it generally takes them a lot longer.

They don't however play by the "rules” of how the body generally dies from a disease (withdrawal, sleeping more, eating less). With dementia as the main diagnosis, they don’t really enter the actively dying process until eating is problematic (choking, holding food in their mouth, not swallowing).

About being on hospice longer than expected: in my opinion you cannot determine a person with dementia has entered the dying process until the difficulty with eating signs occurs. YET more and more hospices are admitting patients way before that happens. Hospices are filling a need that is otherwise missing in our health care system —support, care, and guidance during the very long deteriorating disease process.

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New NCCIH Music and Health Fact Sheet 

A growing body of research shows that music can be good for you. Listening to or making music affects the brain in ways that may help promote health and manage disease symptoms.

For example, there’s evidence that music-based interventions may help ease pain and anxiety; relieve distress in people with cancer; improve sleep quality in people with insomnia; and improve emotional well-being and quality of life in people with Alzheimer’s disease or other forms of dementia.

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Dollars to Digitize ARPA 6.06 Grant Program

Calling all Medicaid-enrolled HCBS and behavioral health providers: Apply today to innovate your organization with new or enhanced digital technology! Visit the ARPA 6.06 Grant portion of the ARPA webpage or see the Dollars to Digitize flyer for more information on the grant program.

Upcoming Webinar: Join us for the ARPA 6.06 Grant Program webinar on Oct. 13, 2022, from 11 a.m. – 12 p.m. MT. Register here for the event.

NHPCO-Led Coalition Welcomes Introduction of GRIEF ACT in Congress 

(Alexandria, VA) The National Hospice and Palliative Care Organization (NHPCO) and its affiliate group, the Hospice Action Network (HAN) applaud today’s introduction of the Grief Resilience Investment and Education Fund (GRIEF) Actin the House of Representatives by Congressman Joe Morelle (NY-25).  

If passed, the GRIEF Act would expand access to bereavement care by providing grant funding for health care providers, like hospices, to expand previously unfunded community grief support programs. 

As a result of the COVID-19 pandemic, grieving individuals, families, children, and communities need access to timely bereavement care that is provided by experts who are knowledgeable, experienced, and trained in helping others cope with grief. This legislation aims to ensure that Americans who have suffered from loss receive the care they need and deserve. 

“For too long, mental health needs have gone unaddressed, casting a shadow over families contending with significant loss—especially during the pandemic, said Congressman Joe Morelle. “Establishing a National Grief Strategy will help people move forward with the help of skilled professionals creating a culture of awareness and support. It is my hope that this legislation helps end the stigma around mental health and ensure families can access the essential support they deserve.” 

The bill provides funding for grief counseling for individuals and families, bereavement care for children, education and training for bereavement care providers and peer support, a national public information campaign, and research to examine the experience of complicated and prolonged grief and the efficiency of treatment approaches. 

As the leading voice of the hospice community, NHPCO worked in collaboration with supporting organizations to garner Congressional support for this bill. Support comes from the American Psychological Association (APA), the Hospice Foundation of America (HFA), and the Social Work Hospice and Palliative Care Network (SWHPN). . .

Call on your Member of Congress to Cosponsor the GRIEF Act!