Guest post by Susan H. McFadden and John T. McFadden
We are grateful for the opportunity to respond to the National Plan to Address Alzheimer’s Disease. While we applaud any initiative that raises awareness of the growing number of persons living with some form of dementia and that begins to marshal resources to address the needs that come with cognitive loss, we have serious concerns about some items included in the plan and—just as important—the critical needs that are not addressed in the plan.
Among our concerns:
- Why does the United States have a National Plan to address Alzheimer’s Disease when the United Kingdom and other European countries have developed or are developing national dementia strategies? There are many forms of dementia besides Alzheimer’s and many people will therefore feel excluded by this national plan. The plan briefly notes the existence of other forms of dementia but, remarkably, then states that it will refer broadly to all forms of dementia as Alzheimer’s disease (p. 4; p. 39), ignoring the fact that these other dementias have their own unique characteristics. Buried in Action 1.A.4 is a “scientific workshop on other dementias” to be held in 2013.
- The date of 2025 seems arbitrary. What’s so special about 2025? The UK’s National Dementia Strategy, published in 2009, set clear, obtainable goals to be achieved in 2014.
- The plan is dominated by a biomedical view of Alzheimer’s disease, neglecting the critical importance of quality-of-life issues. For example, in section 2.A, it speaks of building a workforce “with the skills to provide high-quality care.” All the professions listed are medical, with nothing said about the artists, musicians, poets, dancers, and others who are already providing high-quality opportunities for creative engagement that, at the very least, can dramatically improve the quality of life for persons living with dementia. Many of these programs are supported by high-quality research demonstrating their efficacy at improving well-being, reducing stigma, supporting relationships with family and friends, etc. Why are they completely neglected in this plan?
- The U.S. plan mentions friends exactly three times in 69 pages. Besides noting that “A person with the disease may no longer recognize family and friends,” the National Plan mentions friends twice as examples of informal caregivers. Our book, Aging Together: Dementia, Friendship, and Flourishing Communities, argues that Alzheimer’s and the other dementias must be viewed in the context of communities where citizens and organizations collaborate to enable people to live well with dementia. (Note: the UK national strategy is not about curing Alzheimer’s disease; it’s about “living well with dementia.”) We cannot rely solely on family members, even with all the professional, government-supported programs suggested by this plan to help them.
- The National Plan suggests that the primary goal is for medical science to hasten development of a “magic bullet” that will somehow cure, prevent, or at least radically slow the progression of Alzheimer’s disease and other dementias. We do not deny this is a worthy goal. However, we caution that there may be many different forms of Alzheimer’s disease in addition to the other identified forms of dementia. Moreover, these pharmacological interventions will not likely be available for persons already living with memory loss and cognitive decline, a population whose numbers will swell by 2025. We regret that the plan has so little to offer to these persons, their primary care partners, their friends, and their communities.
- We wish the National Plan had taken greater account of the National Dementia Strategy developed by the UK (and similar strategies in other European nations) that focus far more on changing perceptions about dementia (reducing fear and stigma), improving quality of life in the present, and embracing the unique identities of people living with the diagnosis. We understand that Goal 4 aims to “enhance public awareness and engagement,” but we are concerned about how the “public awareness” message will be communicated. There is no foundational statement that all aspects of this plan will affirm the personhood and dignity of those living with dementia. Thus “greater public awareness” could possibly be shaped by a view of dementia framed by fear and expressed narrowly in terms of biomedical approaches to care. Although we think research on identification of biomarkers and early diagnosis and treatment must be supported, we urge that the “translation” of this message to the public be informed by a fundamental affirmation of the whole person—body, mind, and spirit.
Susan H. McFadden is a professor of psychology at the University of Wisconsin, Oshkosh. She writes extensively on aging, religion, and spirituality. John T. McFadden is a chaplain with Goodwill Industries of North Central Wisconsin. They are the coauthors of Aging Together: Dementia, Friendship, and Flourishing Communities.