In the newest edition of the Aging Life Care Journal, Aging Life Care Professionals examine the issues faced by those who are younger and diagnosed with atypical dementias. Jennifer Pilcher-Warren, MS, PhD, CMC, is the editor-in-chief. Her message to readers is below. To read the entire issue of the Journal of Aging Life Care: Atypical Dementias, you can find it here.
From Jennifer Pilcher-Warren, MS, PhD, CMC, editor-in-chief:
Greetings! I am very excited to present this latest issue of the Journal of Aging Life Care which explores the unique challenges for Aging Life Care Managers who are serving younger clients with atypical dementias. Having grown up in a family where both my maternal grandmother and aunt were diagnosed with Young-Onset Alzheimer’s disease, this is a topic near and dear to my own heart. However, for many of us in the care management field who have traditionally worked with geriatric clients, this is a new and often challenging population to work with.
Whether because of improved detection, increased awareness among medical providers or the fact that incidences are more frequent due to early baby boomers, the reality is we are seeing an ever-increasing number of younger clients with dementia in our practices. There is a high likelihood that these clients will have a less common type of dementia. For example, in 75% of FTD cases, onset occurs before the age of 65 (Onyike, CU; Dhiel-Scmid, J: The epidemiology of frontotemporal dementia, International Review of Psychiatry, 2013: 25: 130-137).
These clients may have recently retired or even forced to leave work, often not on good terms and thus may be experiencing devastating financial consequences. Frequently, these clients have grade school or teenage children living at home, further complicating the situation. Caregivers for clients with young-onset dementias experience levels of stress, burden, and depression that some studies suggest are even higher than for caregivers of clients with late-onset (van Vliet, D., de Vugt, M. E., Bakker, C., Koopmans, R. T. C. M. and Verhey, F. R. J. (2010), Impact of early onset dementia on caregivers: a review. Int. J. Geriat. Psychiatry, 25: 1091–1100. doi:10.1002/gps.2439). As a result, these clients, and their families, deserve a different care management approach.
Resources for this population are scarce. We, as Aging Life Care Managers, are often placing these younger clients in facilities where they have no peer group, where programming is often inappropriate, and direct care strategies are either unclear or insufficient. Moreover, in addition to age, facilities are often resistant or simply unwilling to accepting clients with atypical dementias such as FTD or Lewy Body Dementia due to stigma about associated behavioral issues. In fact, according to the Cognitive Neurology and Alzheimer’s Disease Center at the Northwestern University Feinberg School of Medicine, most adult day programs and residential care facilities are not prepared to address the special needs of a younger patient, especially if their behavioral symptoms are difficult to manage. It is understandable why facilities would worry about the safety of their other residents who are not as healthy, mobile, and functionally capable as this younger population. However, as very few placement options exist for these clients, it can leave the Aging Life Care Manager perplexed and in a very difficult position.
This issue is designed to highlight the particular struggles of this type of client and increase awareness of their unique challenges. We hope the authors’ expertise provided in this issue will serve to educate and/or reinforce each reader’s understanding of the different types of atypical dementias, present real life situations where Aging Life Care Management has been effective in working with these clients, provide some strategies and techniques for working with these clients, and inform you about new, innovative, and practical ideas being used to care for this population. On behalf of the entire board and my fellow Guest Editor, Ted Aransky, MEd, LSW, CMC, we hope you enjoy this latest issue and find it beneficial.
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