The plan provides
recommendations for Pennsylvania to address the epidemic of Alzheimer's disease
and related disorders occurring in the commonwealth.
The report contains
seven recommendations which involve increasing awareness, the need for private/public
partnerships, brain health, care and early diagnosis, family and caregiver support,
healthcare delivery, workforce and research. Click
here to download a copy of the plan.
Dire Circumstances
The report lays out
the dire circumstances faced by Pennsylvania in confronting what it refers to
as an epidemic.
An estimated 400,000
Pennsylvanians are living with Alzheimer’s disease and related disorders (ADRD).
(The plan suggests that use of the term ADRD is more respectful and less
stigmatizing than the word dementia). Included under the ADRD umbrella are
Alzheimer’s disease itself, Vascular Dementia, Dementia with Lewy Bodies,
Frontotemporal Lobal Degeneration, and mixed dementias.
Older age is the
greatest risk factor for ADRD. Approximately 5% of Americans who are between
ages 65 and 74 have ADRD. About 1/3rd of persons over age 85 suffer
from some form of dementia. This means that the number of people with ADRD is
expected to skyrocket over the next fifteen years with the aging of the U.S.
population.
Pennsylvania has the
fourth highest percentage of elderly in the nation with 2.7 million residents
over age 60. By 2030 that number is projected to rise to 3.6 million.
In 2012, the cost of
health care, long term care, and hospice care for people with ADRD was estimated
nationally at $200 billion. In addition, unpaid caregivers bear a tremendous
financial burden. It is estimated that in 2012 more than 15 million Americans
provided 17.5 billion hours of unpaid care to people with ADRD.
Approximately 70
percent of Pennsylvania residents with ADRD live at home. An estimated 667,000
Pennsylvanians provide unpaid care for people with ADRD. The toll on family
caregivers is enormous, emotionally, financially, and on their overall health. One
in 12 Pennsylvania families is affected by ADRD.
The cost of care for
individuals with ADRD tends to be much higher than for individuals with other
chronic health problems because they tend to be older, have other coexisting
conditions and have more severe functional impairments that limit their ability
to care for themselves.
Providing support to
persons with ADRD and their caregivers is more difficult in rural areas.
Pennsylvania is the second most rural state in the nation. Nearly 3.5 million
people resided in the commonwealth’s 48 rural counties in 2010.
Plan Recommendations
The committee
developed seven overall recommendations for Pennsylvania’s response to the ongoing increase in the prevalence of ADRD.
Recommendation 1 -
Improve awareness, knowledge, and sense of urgency about medical, social, and
financial implications of ADRD across the commonwealth.
Recommendation 2 - Due
to the magnitude of the ADRD epidemic, identify and, where possible, expand
financial resources to implement this plan through federal, state, foundation,
private, and other innovative funding mechanisms and partnerships.
Recommendation 3 -
Promote brain health and cognitive fitness across the life cycle from birth
onward.
Recommendation 4 -
Provide a comprehensive continuum of ethical care and support that responds to
social and cultural diversity, with services and supports ranging from early
detection and diagnosis through end of life care.
Recommendation 5 -
Enhance support for family and non-professional caregivers and those living
with ADRD.
Recommendation 6 -
Build and retain a competent, knowledgeable, ethical, and caring workforce.
Recommendation 7 -
Promote and support novel and ongoing research to find better and effective
cures, treatments, and preventive strategies for ADRD.
Plan Goals and Strategies
Section VI of the Plan
presents much of the meat of the report: the committee’s recommendations for
goals and strategies to be implemented by the commonwealth and its partners to
confront the growing ADRD epidemic. Specific goals and strategies to achieve
them are provided for each of the report’s recommendations.
The goals and
strategies are too lengthy to summarize here – the reader is directed to the
report itself: Click
here to download a copy. I’ll only comment on a few of the areas that
struck me as I read the report.
- Alzheimer’s
disease is among the most feared diseases in the United States, yet most people
know little or nothing about it. This lack of awareness and understanding
results in stigmatization of those affected as well as their caregivers, and
prevents people from getting a diagnosis, planning for the future, and getting
the help they need. In response the plan proposes raising awareness and
knowledge of ADRD among health care and aging service providers and inclusion
of ADRD training in the curricula for health professionals. It also suggests promotion
and support of the development of dementia friendly communities.
- The
report notes that research suggests that about half of ADRD risk is linked to
seven modifiable lifestyle factors: diabetes, hypertension, obesity, smoking,
depression, education, and physical activity. Goal 3A is to potentially delay
to onset of ADRD by promoting brain health and cognitive fitness.
- The
report recommends expanding the availability of and access to care management
services in order to coordinate services for individuals living in settings across
the continuum of care. (Goal 4C)
- The
report recognizes the devastating impact of caregiving on the caregiver. Goal
5B is to provide resources and support that will better enable informal caregivers
to care for both their loved ones and themselves. This would include training
and education for non-professional caregivers and those living with ADRD. (Goal
5D).
- Recommendation
2 is to expand financial resources to implement the plan. Given the limited
resources currently available it argues that there is an urgent need to
identify innovative, non-traditional funding sources for ADRD research and
care.
Unfortunately, the funding sources suggested in Recommendation 2 are hard to identify. It’s clear to this writer that a more
significant public sector financial response will be required to
implement the Plan’s recommendations. ADRD is expensive, and the
toll will be paid one way or another by our society.
However politically
inconvenient it may be, more public money for increased research, caregiver
support, workforce development etc. is needed if we are to respond effectively
to the epidemic. To me, a plan that does not shout out for greatly increased
public funding misses a key element needed to address the ADRD crisis.
Creation of the Pennsylvania
Plan was a notable early step towards a more effective response to the reality of ADRD. The swelling crisis facing aging Pennsylvania is fateful. Hopefully, the
Plan’s recommendations, goals and strategies won’t be disregarded.
