End-of-Life Care for Patients with Dementia

Thank you to the Healthcare Initiative Foundation for providing funding for the Montgomery Hospice dementia education project.

Below are some links to research and other resources for clinicians who work with dementia patients, as well as some resources for families who have loved ones with dementia.

Resources for clinicians:

• Does Hospice Improve Quality of Care for Persons Dying from Dementia?
  Bereaved family members of people with dementia who received hospice reported higher perceptions of the quality of care and quality of dying. Journal of the American Geriatrics Society August 16, 2011
  
• Medicare Expenditures Among Nursing Home Residents With Advanced Dementia from the Archives of Internal Medicine January 10, 2011
  
• Ethical Issues in Alzheimer's Disease: End-of-Life Care from the Alzheimer's Association. Alzheimer's disease in its advanced stage should be defined as a terminal disease.
  
• Prediction of 6-Month Survival of Nursing Home Residents With Advanced Dementia Using ADEPT vs Hospice Eligibility Guidelines
  AMA. 2010;304(17):1929-1935.
  
• The Clinical Course of Advanced Dementia The New England Journal of Medicine
  Volume 361:1529-1538 October 15, 2009 No. 16
  Dementia is a leading cause of death in the United States but is underrecognized as a terminal illness.
  
• Dying from Dementia, Greg A. Sachs, M.D.
  The New England Journal of Medicine Volume 361:1595-1596 October 15, 2009 Number 16
  Studies have shown that patients with dementia who receive hospice care also have fewer hospitalizations and milder psychiatric symptoms as compared with those not receiving hospice care.
  
• Video decision support tool for advance care planning in dementia British Medical Journal Published 28 May 2009 BMJ 2009;338:b2159
  
• Hospice Care for Patients with Dementia
  Journal of Pain and Symptom Management Volume 34, Issue 1, Pages 7-16 (July 2007)
  
• Estimating Prognosis for Nursing Home Residents With Advanced Dementia
  JAMA Vol. 291 No. 22, June 9, 2004
  Advanced dementia is an incurable, progressive condition for which palliation is often the primary goal of care, regardless of life expectancy.
• The Copper Ridge Institute
  The Copper Ridge Institute is at the forefront of scientific research related to the treatment and care of those with Alzheimer's disease and other dementias.
• Dementia Care Practice Recommendations for Assisted Living Residences and Nursing Homes from the Alzheimer's Association (8.29 MB file)
• Alzheimer's Disease and End-of-Life Issues
  Alzheimer's Disease Education & Referral Center Connections 2003 Volume 11, Numbers 1 and 2
  

Resources for families:

• Montgomery Hospice flyer for families: Expert End-of-Life Care for Alzheimer's Patients: when is your loved one eligible?
• Medicare's Hospice Benefit for Beneficiaries with Alzheimer's Disease, a publication of the Alzheimer's Association
  
• Alzheimer's Disease and Hospice Care, resources from the Hospice Foundation of America
  
• New York Times article: Treating Dementia, but Overlooking Its Physical Toll Tara Parker-Pope October 19, 2009
  Dementia is a physical illness, too - a progressive, terminal disease that shuts down the body as it attacks the brain. Although the early stages can last for years, the life expectancy of a patient with advanced dementia is similar to that of a patient with advanced cancer.
  
• Dementia At the End of Life U.S. National Institutes of Health, National Institue on Aging
  
• Coping with Late-Stage Alzheimer's Disease Alzheimer's Disease Education & Referral Center