Advanced Dementia Resources and Issues

For many who have cared for someone living with dementia, it’s called “the long good bye.” Caregivers are grieving the loss of their loved one while they’re still alive, prolonging and complicating the grief process. Often the person can linger for many years in an advanced dementia stage, immobile and unable to care for him or herself, in need of 24/7 care. At this point, because there is no cure, good palliative care improves quality of life immeasurably – having good person-centered care, love, and gentle touch.

Renowned dementia expert and occupational therapist Teepa Snow calls this the “Pearl Stage” in her Positive Approach™ to Dementia Care teachings. Some quotes from Teepa Snow about the Pearl or end stage of dementia include:

  • “Care partners benefit from learning the art of letting go rather than simply giving up.”
  • “While hidden like a pearl in an oyster shell, I (person with dementia) will still have moments when I become alert and responsive.”
  • More about Teepa Snow’s stages of dementia and, her speaking about the stages of dementia on YouTube.

Even though the outside of a pearl is the rough and rigid oyster shell, there is still a beautiful pearl inside.

Each person is different. There’s a quote with unknown source that says something like “If you’ve met one person with dementia, you’ve only met one person with dementia” – meaning that each individual is unique in the way it progresses. Some can seem to be dying only to live for much longer than expected. This is when hospice and the extra care this service provides can be of such benefit for the person and the caregiver/s. For others, dementia progression is rapid from onset to the end of life.

We hope the following resources and videos can help answer some of your questions about advanced dementia issues.

We have selected six videos from Hawai‘i for you to watch right here, produced by the Hawaii Alzheimer’s Disease Initiative (HADI). HADI at the UH Center on Aging has an archive of all videos and slides by expert speakers on their HADI website (PDF list below the videos)

Update from Kōkua Mau: Advance Care Planning and Dementia

Presenter: Jeannette Koijane, MPH

Legal Preparedness: The Challenge of Capacity

Presenter: Scott C. Suzuki, JD, MPH

Palliative Care for Persons Living with Dementia

Presenter: Laurel Coleman, MD

Dementia and Hospice; End of Life Care and Letting Go: Providing Care in the Final Stages of Dementia

Presenters: Emma Grote, MD & JP Rev. Dr. Sabbithi, BCC.

End of Life Care and Letting Go: Providing Care in the Final Stages of Dementia

Presenter: Dorothy Colby

Dysphagia in the Older Adults

Presenters: Aida Wen, MD & Shari Goo-Yoshino, MS, CCC-SLP

About the Hawaii Alzheimer’s Disease Initiative (HADI)

In 2015, the University of Hawaii Center on Aging received a 3-year grant from the Administration for Community Living/Administration on Aging to increase services and supports for persons living with ADRD and their caregivers – the Hawaii Alzheimer’s Disease Initiative. One of the objectives was to “provide effective information, care and support services to persons living with moderate to advanced dementia and their caregivers.” The videos linked above were created as part of the grant activities.

  • PDF file with the full listing of all 34 HADI ECHO videos. This PDF file offers additional information and log-in instructions at the end of the document on how to access all videos in the series.

Key Publication: Advanced Dementia

If you’d like to learn more about advanced dementia care and current expert recommendations, here is a link to a comprehensive article Advanced Dementia in the New England Journal of Medicine on this topic by Susan L. Mitchell, MD, MPH

Some Key Clinical Points from this article are:

  • Advanced dementia is a leading cause of death in the U.S.
  • Features include profound memory deficits, minimal verbal communication, loss of ambulatory abilities, the inability to perform activities of daily living, and urinary and fecal incontinence.
  • The most common clinical complications are eating problems and infections, and those require management decisions.
  • Advance care planning is a cornerstone of care; more than 90% of health care proxies state that patient comfort is the primary goal.
  • Observational studies do not show any benefits of tube feeding in persons with advanced dementia, and tube feeding is not recommended.
  • Observational studies show several benefits of hospice care. Patients should be offered palliative and hospice care services if they are available.

Resources and Links

Alzheimer’s Association on Late Stage Caregiving:

Medicare’s hospice benefit for beneficiaries with Alzheimer’s disease: (pdf file)

End of Life Care for People with Dementia, National Institute on Aging

National Alzheimer’s and Dementia Resource Center Archives: (in the Search box, you can type in a words or phrases like hospice, palliative care or advanced dementia that will lead to current tools, article and webinars on those topics by leading national experts.)

Your Conversation Starter Kit for Families and Loved Ones of People with Alzheimer’s Disease or Other Forms of Dementia from The Conversation Project. This 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 as a PDF on the The Conversation Project’s website.

Advance Directive for Dementia

Choosing Wisely”, American Geriatrics Society, Ten Things Physicians and Patients Should Question (pdf file)

Namaste Care: Quality of Life Until the End of Life:  (*Note: Some Hawai‘i residential facilities, hospices, and nursing homes have integrated Namaste Care into their programs)

Selected Videos

“How to Connect with a Resting Person Living with Late Stage Dementia” with Teepa Snow
Teepa Snow on YouTube “How to Recognize Pain in Late Stage Dementia Patients”

Teepa Snow YouTube: Supporting Someone in the Late Stage (Pearl State) of Dementia: (please click on the link, the embed does not work)

Naomi Feil (Validation Technique for Dementia) You Tube Video illustrating validating communication with someone with Advanced Dementia:

Note: These links are being provided as a convenience and for informational purposes only; they do not constitute an endorsement or an approval by the Kōkua Mau of any of the products, services or opinions of the corporation, organization or individual. Kōkua Mau bears no responsibility for the accuracy, legality or content of the external site or for that of subsequent links. Contact the external site for answers to questions regarding its content.