7
Background
6.7 million Americans currently live with Alzheimer’s disease or another form of dementia, a number
that is projected to grow to nearly 14 million by 2060.
4
Despite the high prevalence of dementia—
roughly 11 percent of U.S. adults over the age of 65 and nearly 35 percent over the age of 85 have
dementia
5
—many people with dementia are not consistently receiving high quality, high value care.
People with dementia experience poor outcomes across an array of metrics, including high rates of
hospitalization, ED visits, and post-acute care utilization,
6,7
high rates of depression, behavioral and
psychological symptoms of dementia (BPSD),
8
and poor management of other co-occurring
conditions.
9,10
As the condition progresses, many people with dementia will need long-term services and
supports, including care in a nursing facility or home and community-based services.
With support and collaboration, primary care can play an important role in improving care delivered to
people with dementia, including providing person-centered care and coordinating across providers to
manage a person’s co-occurring conditions.
11
However, the primary care setting often lacks the
resources to independently provide the intensive services that people with dementia need—services
such as identifying and helping connect to services and supports, addressing behavioral symptoms, and
re-stabilizing after an acute health event.
Dementia not only affects quality of life for people with the disease—it also significantly impacts quality
of life for caregivers. Many caregivers for people with dementia, who are often Medicare beneficiaries
themselves, report high levels of stress and depression,
12
which negatively affect their overall health and
increase their risk for serious illness, hospitalization, and mortality.
13,14
Dementia also imposes a large
financial burden on beneficiaries and their families: out-of-pocket spending in the last five years of life,
including for long term services and supports, is higher for people with dementia compared to those
4
Alzheimer's Association. 2023 Alzheimer's Disease Facts and Figures.
https://www.alz.org/media/documents/alzheimers-facts-and-figures.pdf
5
Ibid.
6
Lin P-J, Fillit HM, Cohen JT, Neumann PJ, et al. Potentially avoidable hospitalizations among Medicare
beneficiaries with Alzheimer’s and related disorders. Alzheimer’s & Dementia. January 2013. 9(1): 30-38.
7
Feng Z, Coots LA, Kaganova Y and Wiener JM. Hospital and ED Use Among Medicare Beneficiaries with Dementia
Varies by Setting and Proximity to Death. Health Affairs. April 2014. 33(4).
8
Lyketsos, CG, Lopez O, Jones B, et al. Prevalence of Neuropsychiatric Symptoms in Dementia and Mild Cognitive
Impairment: Results from the Cardiovascular Health Study. JAMA. September 2002. 288(12): 1475-1483.
9
Zhao Y, Kuo T-C, Weir S, et al. Healthcare costs and utilization for Medicare beneficiaries with Alzheimer’s. BMC
Health Services Research. May 2008.
10
Thorpe CT, Thorpe JM, Kind AJH, et al. Receipt of Diabetes Monitoring in Older Adults with Co-Morbid Dementia.
Journal of the American Geriatric Society. April 2012. 60(4): 644-651.
11
Boustani M, Schubert C, and Sennour Y. The challenge of supporting care for dementia in primary care. Clin
Interv Aging. December 2007. 2(4).
12
Teri L, McKenzie G, Logsdon RG, McCurry SM, Bollin S, et al. Translation of two evidence-based programs for
training families to improve care of persons with dementia. Gerontologist. 2012. 52: 452–459.
13
Schubert CC, Boustani M, Callahan CM, Perkins AJ, Hui S, et al. Acute care utilization by dementia caregivers
within urban primary care practices. Journal of General Internal Medicine. 2008: 23: 1736–1740.
14
Schulz R, Martire LM. Family caregiving of persons with dementia: prevalence, health effects, and support
strategies. American Journal of Geriatric Psychiatry. 2004. 12: 240–249.