Reviewed By: Mark Jack and Andrew Settlemire
Review of Lynne C. Howarth’s “Dementia Friendly Memory Institutions: Designing a Future for Remembering” by Mark Jack and Andrew Settlemire
“Dementia Friendly Memory Institutions: Designing a Future for Remembering” by Lynne C. Howarth focuses on Alzheimer’s Disease and Related Dementias (ADRD), and the contributions libraries and related institutions can and do make to evolving treatment and disability rights paradigms. Howarth begins by describing Alzheimer’s and dementia, and then provides an informative gloss on the history of the medical treatment of dementia, focusing on the shift from a disease-focused treatment to a person-centered treatment. Howarth describes this person-centered treatment as tapping into the passions and interests of the patient by designing a program which allows the patient to explore these interests while treating the patient with care and respect. This also dovetails with a discussion of the changing, international legal and political frameworks surrounding disability rights
This focus on humane and medically advantageous treatments for ADRD feeds into an extended examination of the role “libraries, archives, and museums” have “as memory institutions” in meeting the needs of and bringing into active membership within the larger community, people living with ADRD (Howarth, 2020, p. 21). In this context, Howarth cites examples spanning the globe, from Australia to Japan, England and the United States, covering interior design modifications and innovative programming, while not neglecting the challenges these institutions will no doubt face.
Core Research Questions
What are the best practices for treating those with ADRD?
What are the benefits of person-centered care (PCC) for people with ADRD?
How can cultural heritage institutions (galleries, libraries, archives, and museums) meet the needs of those with ADRD?
Methods Used to Answer the Research Questions
Howarth has examined current and historical medical literature alongside pronouncements by international bodies related to the evolving discourse on disability rights in order to trace the changing understanding of ADRD and current treatments. Howarth (2020) provides a list of sixty-one different references of which the words dementia and Alzheimer’s appear repeatedly in over half of the titles, and includes references from organizations such as Alzheimer Society of Saskatchewan, Alzheimer’s Disease International, Best Alzheimer’s Products, Dementia Friendly America®, and World Health Organization. These resources are open and readily available. She also includes references which originated in ADRD specific journals such as Alzheimers & Dementia (The Journal of the Alzheimer’s Association), Dementia, and American Journal of Alzheimers and Other Dementias among others.
While Howarth’s research strongly stems from most of these journals, she does not limit herself to articles that solely focus on Alzheimer’s and dementia. Other articles that Howarth (2020) relies upon are focused on aging, care for the elderly and those with disabilities, and residential care programs that are primarily used to compare and contrast care for those with dementia and their contemporaries. In considering those with Alzheimers and dementia as being akin to the eldery and those with disabilities, Howarth uses resources from the United Nations, Department of Economic and Social Affairs and the U. S. Department of Health & Human Services, National Institute on Aging all of which provide policy and evidence as to how those with ADRD should be treated and the accommodations which should be made. Howarth also looks at residential care programs in order to provide models of care programs for those with ADRD.
Findings and conclusions.
Howarth (2020) states, “The results of the study indicated that the combination of person- centered program interventions in combination with drug therapy was “97% more beneficial for individuals with moderate-to-severe Alzheimer’s Disease than memantine treatment alone” (Reisberg et al., 2017, p. 100)” (p.25).Considering these person-centered programs, Howarth (2020) indicates that incorporating individual interests and passions into PCC more effectively treats ADRD as the individual receives better care and learn new skills, or forgotten skills, which help to rebuild the Alzheimer person’s self-esteem and self-respect, providing a higher-quality of life (Howarth, 2020, p.24)
Howarth’s examination of the changing conceptualization of ADRD, both from a medical and concurrent legal/political standpoint, points to both great and hopeful progress and the need for reform. The change from a disease-centered to a person-centered approach has been adopted in institutional language, from the the United Nations’ Convention on the Rights of Persons with Disabilities to the International Federation of Library Associations and Institutions (IFLA) Standing Committee on Libraries Serving Disadvantaged Persons (LSDP) (Howarth, 2020, p. 27 & 31).
Howarth locates within Libraries and other “memory institutions” a convergence of skills and resources that are uniquely suited to embracing the new person-centered approach to people living with ADRD and their caregivers. Going further, Howarth notes that “a greater impetus towards sharing resources, expertise, technology, and even physical space through examples of convergence among so-called memory institutions,” presents a further “opportunity for taking a leadership role in advancing quality of life for those living with dementia” (p. 34).
While primarily locating positive developments as occurring at single institutions, the opportunities for collaboration are highlighted repeatedly. Of course, as Howarth (2020) notes, there are challenges to these potential changes as well, budget restrictions being foremost. “When public libraries are accountable for funding on the basis of usage counts, a small group of eight engaged in a resource-intensive art or music therapy program (for example) can be vulnerable to being cut” (p. 35).
What American libraries can learn from global practice about designing services for diverse populations.
As Howarth’s examples are not only multidisciplinary, but international in scope, the practice of making American Libraries more friendly to those living with ADRD and their caregivers are easily transmittable to the particular contexts of American libraries. And, given that each community will face varying restrictions on budgets as well as varying needs, the range of practices outlined by Howarth, which run from architectural design to collection development and programming ideas, provide for a wealth of new approaches to designing for those with ADRD and their caregivers. Perhaps the most crucial point, however, is that collaboration and collective advocacy by libraries and other memory institutions needs to be understood as based within a global context and informed by medical advancements and a co-evolving framework of disability rights.
Howarth, L. C. (2019). Dementia Friendly Memory Institutions. The International Journal of Information, Diversity, & Inclusion (IJIDI), 4(1), 20–41. doi: 10.33137/ijidi.v4i1.32529