The Pennsylvania Alzheimer's Disease Planning Committee issued its Pennsylvania State Plan for Alzheimer's Disease and Related Disorders on February 7, 2014.
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.
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.
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.