Familiarity, Autonomy, and Safety Together (FAST): A program for adults with dementia and their caregivers

Authors

  • James Bachmann University of British Columbia

DOI:

https://doi.org/10.21900/j.jloe.v3.1190

Keywords:

programming, public libraries, dementia, Alzheimer's, caregivers

Abstract

Almost 50 million people worldwide are currently living with dementia, with approximately half a million and six million of those people living in Canada and the United States, respectively.  Familiarity, Autonomy, and Safety Together (FAST) is a program idea for adults living with dementia and their family caregivers that draws upon the ideas of familiarity, autonomy, and safety that underlie dementia villages, a recent development in residential care facilities for people living with dementia.  FAST uses themed stations that emphasize familiarity and which program participants living with dementia can move about and participate in at will, providing an often lost sense of autonomy.  At the same time, caregivers, who often suffer from burnout and related problems, are provided an opportunity to socialize with each other and receive education and support.  In this way, people living with dementia and their caregivers can independently benefit from the FAST program.  Further, many libraries will be able to provide the FAST program at little or no cost to the library, and a modified version of the FAST program can be brought to patrons in other locations, such as a residential care facility.

References

ACT on Alzheimer’s. 2018. “Dementia Friendly Libraries.” https://actonalz.org/df-libraries.

Alzheimer Society of British Columbia. 2023. “Family Caregiver Support Groups.” https://alzheimer.ca/en/bc/We-can-help/Support-groups/Family-caregiver-support-groups

Alzheimer Society of Canada. 2023. “Communicating with People Living with Dementia.” https://alzheimer.ca/en/help-support/i-have-friend-or-family-member-who-lives-dementia/communicating-people-living-dementia.

Alzheimer Society of Canada. 2022a. “Report 1: Navigating the Path Forward for Dementia in Canada.” The Landmark Study: Path. https://alzheimer.ca/sites/default/files/documents/Landmark-Study-Report-1-Path_Alzheimer-Society-Canada.pdf.

Alzheimer Society of Canada. 2022b. “Progression.” Published 2008; last reviewed 2022. https://alzheimer.ca/sites/default/files/documents/Progression-Overview-Alzheimer-Society.pdf.

Alzheimer’s Association. 2022. “2022 Alzheimer’s Disease Facts and Figures.” Alzheimer’s & Dementia 18, no. 4: 700–789. https://doi.org/10.1002/alz.12638.

Alzheimer’s Association. 2023. “Communication and Alzheimer’s.” https://www.alz.org/help-support/caregiving/daily-care/communications.

Alzheimer’s Society. 2020 “Making Your Home Dementia Friendly.” Published October 2015; revised July 2020. https://www.alzheimers.org.uk/sites/default/files/migrate/downloads/making_your_home_dementia_friendly.pdf.

Alzheimer’s Society. 2021 “The Progression, Signs and Stages of Dementia.” Last revised February 2021. https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/how-dementia-progresses/progression-stages-dementia.

Barrett, Peter, Monika Sharma, and John Zeisel. 2019. “Optimal Spaces for Those Living with Dementia: Principles and Evidence.” Building Research & Information 47 (6): 734–746. https://doi.org/10.1080/09613218.2018.1489473.

Berry, Brandon, Ester Carolina Apesoa-Varano, and Yarin Gomez. 2015. “How Family Members Manage Risk Around Functional Decline: The Autonomy Management Process in Households Facing Dementia.” Social Science & Medicine, 130: 107–114. https://doi.org/10.1016/j.socscimed.2015.02.014.

Bressan, V., Chiara Visintini, and Alvisa Palese. 2020. “What Do Family Caregivers of People with Dementia Need? A Mixed-Method Systematic Review.” Health and Social Care in the Community, 28 (6): 1942–1960. https://doi.org/10.1111/hsc.13048.

Brodaty, Henry and Marika Donkin. 2009. “Family Caregivers of People with Dementia.” Dialogues in Clinical Neuroscience, 11 (2): 217–228.

CBC News. 2019. “New Residents Settle into ‘Dementia Village’ in Langley.” Last updated September 2, 2019. https://www.cbc.ca/news/canada/british-columbia/dementia-village-langley-1.5267630.

Charbonneau, Deborah H. and Priya Rathnam. 2020. “Memory Cafes and Dementia-Friendly Libraries: Management Considerations for Developing Inclusive Library Programs.” Journal of Library Administration, 60 (3): 308–315. https://doi.org/10.1080/01930826.2020.1727282.

Duggleby, Wendy, Allison Williams, Karen Wright, and Sue Bollinger. 2009. “Renewing Everyday Hope: The Hope Experience of Family Caregivers of Persons with Dementia.” Issues in Mental Health Nursing, 30 (8): 514–521. https://doi.org/10.1080/01612840802641727.

Dworkin, Ronald. 1986. “Autonomy and the Demented Self.” The Milbank Quarterly, 64 (Supplement 2): 4–16. https://www.milbank.org/quarterly/articles/autonomy-and-the-demented-self/.

Government of Canada. 2017. “Dementia in Canada, Including Alzheimer’s Disease: Highlights from the Canadian Chronic Disease Surveillance System.” https://www.canada.ca/en/public-health/services/publications/diseases-conditions/dementia-highlights-canadian-chronic-disease-surveillance.html.

Goyer, Amy. 2022. “Memory Cafés Offer Social Activities for Those Living with Dementia.” AARP, June 15, 2022. https://www.aarp.org/caregiving/basics/info-2019/memory-cafe.html.

Haeusermann, Tobias. 2018. “The Dementia Village: Between Community and Society.” In Care in Healthcare: Reflections on Theory and Practice, edited by F. Krause and J. Boldt, 135–167. Palgrave Macmillan. https://doi.org/10.1007/978-3-319-61291-1_8.

Lindeza, Patrícia., Mário Rodrigues, João Costa, Manuela Guerreiro, and Mario Miguel Rosa. 2020. “Impact of Dementia on Informal Care: A Systematic Review of Family Caregivers’ Perceptions.” BMJ Supportive & Palliative Care. http://dx.doi.org/10.1136/bmjspcare-2020-002242.

Martindale-Adams, Jennifer, Linda O. Nichols, Jeffrey Zuber, Robert Burns, and Marhsall J. Graney. 2016. “Dementia Caregivers’ Use of Services for Themselves.” The Gerontologist, 56 (6): 1053–1061. https://doi.org/10.1093/geront/gnv121.

Mayo Clinic. 2020a. “Alzheimer’s and Dementia: What’s the Difference?” https://www.mayoclinic.org/diseases-conditions/alzheimers-disease/expert-answers/alzheimers-and-dementia-whats-the-difference/faq-20396861.

Mayo Clinic. 2020b. “Dementia: Diagnosis and Treatment.” https://www.mayoclinic.org/diseases-conditions/dementia/diagnosis-treatment/drc-20352019.

Mayo Clinic. 2020c. “Dementia: Symptoms and Causes.” https://www.mayoclinic.org/diseases-conditions/dementia/symptoms-causes/syc-20352013.

Memory Cafe Directory. 2023. “What Is a Memory Cafe?” https://www.memorycafedirectory.com/what-is-a-memory-cafe/.

Mortensen, Helle Arendrup and Gyda Ska. Nielsen. 2007. “Guidelines for Library Services to Persons with Dementia.” IFLA Professional Reports, No. 104. https://archive.ifla.org/VII/s9/nd1/Profrep104.pdf.

Moyle, Wendy, Lorraine Venturto, Susan Griffiths, Peter Grimbeek, Margaret McAllister, Debbie Oxlade, and Jenny Murfield. 2011. “Factors Influencing Quality of Life for People with Dementia: A Qualitative Perspective.” Aging & Mental Health, 15 (8): 970–977. https://doi.org/10.1080/13607863.2011.583620.

National Council of Certified Dementia Practitioners. n.d. “Activity Ideas for Alzheimer’s/Dementia Residents.” https://www.nccdp.org/resources/AlzheimersDementiaActivityIdeas.pdf.

Phinney, Alison, Habib Chaudhury, and Deborah L. O’Connor. 2007. “Doing as Much as I Can Do: The Meaning of Activity for People with Dementia.” Aging & Mental Health, 11 (4): 384–393. https://doi.org/10.1080/13607860601086470.

Reisberg, Barry, Steven H. Ferris, Moni J. de Leon, and Thomas Crook. 1982. “The Global Deterioration Scale for Assessment of Primary Degenerative Dementia.” American Journal of Psychiatry, 139 (9): 1136–1139. https://doi.org/10.1176/ajp.139.9.1136.

Smebye, Kari Lislerud, Marit Kirkevold, and Knut Engedal. 2016. “Ethical Dilemmas Concerning Autonomy when Persons with Dementia Wish to Live at Home: A Qualitative, Hermeneutic Study.” BMC Health Services Research, 16: 21. https://doi.org/10.1186/s12913-015-1217-1.

Social Care Institute for Excellence. 2020a. “Dementia: Dementia-Friendly Environments.” https://www.scie.org.uk/dementia/supporting-people-with-dementia/dementia-friendly-environments/.

Social Care Institute for Excellence. 2020b. “Dementia: My Life Is Changing Because of Dementia.” https://www.scie.org.uk/dementia/after-diagnosis/knowing-the-person/life-is-changing.asp.

University of California San Francisco Weill Institute for Neurosciences Memory and Aging Center. 2023. “Behavior & Personality Changes.” https://memory.ucsf.edu/caregiving-support/behavior-personality-changes.

University of Worcester Association for Dementia Studies. 2019. “Dementia Friendly Village Halls: A Guide and Checklist.” https://www.comfirst.org.uk/fckfiles/DFVH_-_A5_20pp_-_Guide_Checklist.pdf.

Witteveen, April. 2017. “Senior Partners: As Baby Boomers Retire, Libraries Reinvent Services to Older Adults.” Library Journal 142 (10): 42.

Downloads

Published

2023-09-07