This collection of resources is designed to empower communities to support dementia patients and their caregivers. Organizations such as the National Association of Area Agencies on Aging strive to increase understanding of dementia and its impact on patients and society, with the broader goal of creating a more dementia friendly culture. With the right information, we can help businesses, retailers, libraries, financial institutions, faith organizations and other community members foster the ability of dementia patients to thrive in day-to-day living.
Since the focus of this guide is on community awareness and action, it does not include information targeting dementia researchers or clinicians.
Alzheimer’s Association. (2020). Stages of Alzheimer’s. Retrieved from https://www.alz.org/alzheimers-dementia/stages
This resource describes the progression of Alzheimer's Disease through three stages: early, middle and late (also known as mild, moderate and severe). It provides a general sense of how abilities change over time, which can help others understand deficits and explore ways to accommodate them. Symptoms worsen over time, although the rate of progression varies.
National Institute on Aging. (n.d.) Alzheimer’s disease & related dementias. Retrieved from https://www.nia.nih.gov/health/alzheimers
This National Institute on Aging (NIA) website offers information about Alzheimer’s disease and related dementias. It includes information about NIA research programs, funding, training, and resources; news; and a clinical trials database. Special sections offer tips for patients and caregivers.
National Library of Medicine. (2020). MedlinePlus: Alzheimer’s disease. Retrieved from https://medlineplus.gov/alzheimersdisease.html
MedlinePlus provides an overview of Alzheimer's disease, the most common type of dementia. It offers information about symptoms, prevention, treatment, and research, along with related resources, such as handouts, journal articles, videos and related sites.
Alzheimer’s Disease International (2019). World Alzheimer report 2019: Attitudes to dementia. Retrieved from https://www.alz.co.uk/research/world-report-2019
This report analyzes findings from the world’s largest survey on attitudes to dementia, drawn from 70,000 people across 155 countries and territories. It spans four demographic groups: people living with dementia, caregivers, healthcare professionals and the general public. Analysis of the study was carried out by the London School of Economics and Political Science.
U.S. Department of Health and Human Services (2019). National plan to address Alzheimer’s disease: 2019 update. Retrieved from https://aspe.hhs.gov/report/national-plan-address-alzheimers-disease-2019-update
On January 4, 2011, the National Alzheimer's Project Act (NAPA) was signed into law in the United States. The Act required the Secretary of the Department of Health and Human Services (HHS) to establish the National Alzheimer's Project to create and maintain a National Plan to overcome Alzheimer's disease. This report provides an annual update of that plan.
World Health Organization (2018). Towards a dementia plan: A WHO guide. Retrieved from https://www.who.int/mental_health/neurology/dementia/policy_guidance/en/
This report provides information about creating and implementing a dementia plan, including stakeholder mapping and priority setting. The process is broken down into three phases: (A) preparing for the dementia plan; (B) developing the plan; and (C) implementing the plan. The guide is geared toward government representatives, but may also be helpful to other stakeholders, such as patients, caregivers, and supportive organizations.
Gitlin, L.N., & Hodgson, N.A. (2018). Better living with dementia: Implications for individuals, families, communities, and societies. London: Elsevier/Academic Press.
This book outlines best practices for improving the lives of patients with dementia. It presents local and global challenges, along with strategies to overcome them. Theoretical and practical frameworks illustrate ways to provide support in various settings, including home, healthcare facilities and the community.
Hobson, P. (2019). Enabling people with dementia: Understanding and implementing person-centred care (Third edition). Cham, Switzerland: Springer International.
This book explores the concept of person-centered dementia care, which advocates for environments that enable people with dementia to retain autonomy wherever possible. It provides an overview of the theory in relation to others, and emphasizes the importance of considering the world from the perspective of people with dementia.
Hughes, J.C., & Williamson, T. (2019). The dementia manifesto: Putting values-based practice to work. Cambridge: Cambridge University Press.
This book explores how a person-centered and rights-based approach can be applied to all aspects of life with dementia. Through vignettes, it addresses diagnosis, treatment, care, social attitudes, research and public policy. Hughes and Williamson highlight a growing focus on creating environments where people can live well with the condition.
Power, G.A. (2014). Dementia beyond disease: Enhancing well-being. Baltimore: HPP, Health Professions Press.
In this book, Power reframes the care and support of people living with dementia using a strengths-based approach. It centers around seven domains of well-being: identity, connectedness, security, autonomy, meaning, growth and joy.
Whitman, L., & Stokes, G. (2015). People with dementia speak out. Jessica London: Kingsley Publishers.
In this book, 23 people share their experiences of living with dementia. Through stories, they demonstrate that with the right support, it is possible to live well with dementia. The collection of testimonies is candid about the condition's challenges, but also optimistic.
Alzheimer’s Association. (2019). Alzheimer’s disease facts and figures. Retrieved from https://alz.org/media/Documents/alzheimers-facts-and-figures-2019-r.pdf
This resource outlines U.S. statistics related to Alzheimer’s disease, the most common type of dementia. It also includes background and context for interpretation of the data. Various sections address prevalence, mortality and morbidity, caregiving, and the utilization and costs of health care, long-term care and hospice.
The Fisher Center for Alzheimer's Research Foundation. (2020). Facts and statistics. Retrieved from https://www.alzinfo.org/understand-alzheimers/alzheimers-disease-facts-and-statistics/
This resource provides statistics on Alzheimer's prevalence and costs in a visually compelling way. It is estimated that 5.8 million Americans aged 65 and older have Alzheimer’s disease, which translates to approximately one new case every 65 seconds. That number is expected to triple to about 14 million by 2050.
Grossman, M. and Wolk, D. [CureTalks] (2018, Aug. 17). Alzheimer's or dementia: What's the difference? [Video]. YouTube. https://www.youtube.com/watch?v=L-h4jgqFWxI
Frontotemporal dementia (FTD) and Alzheimer's are often misdiagnosed or confused with each other. In reality, they are different diseases with different effects on behavior. In this video, Dr. Murray Grossman and Dr. David Wolk from the University of Pennsylvania discuss similarities, differences, risks, diagnostics, stages, treatments and trials.
Social Care Institute for Excellence (SCIE). (2015, June 5). Dementia from the Inside [Video]. YouTube. https://www.youtube.com/watch?v=Erjzl1WL8yQ&feature=emb_title
This video helps viewers imagine what it might feel like to live with dementia. It features the voice of a woman who has the condition and walks through various aspects of life from her perspective. The incidents and memories recounted are based on true experiences gathered from people living with dementia.
Alzheimer’s Association. (2020). Retrieved from https://www.alz.org/
The Alzheimer's Association is striving to end Alzheimer's and other dementia — by advocating for research, risk reduction, early detection, quality care and support. Its website offers information about the disease, prevalence, diagnostics, treatment, research and support. It also highlights news and events.
Alzheimer’s Foundation of America. (2020). Retrieved from https://alzfdn.org/
The Alzheimer’s Foundation of America (AFA) provides support, services and education to individuals, families and caregivers affected by Alzheimer’s disease and related dementias across the U.S., and funds research for better treatment. On its site, you'll find information for caregivers, professional development and memory screening.
Dementia Friendly America (DFA). (n.d.). Retrieved from https://www.dfamerica.org/
Dementia Friendly America is a national network of communities, organizations and individuals seeking to ensure that communities across the U.S. are equipped to support people living with dementia and their caregivers. It is administered by the National Association of Area Agencies on Aging. On its website, you'll find a community toolkit and variety of resources, including sector-specific guides.
The Global CEO Initiative on Alzheimer’s Disease (CEOi). (n.d.). Retrieved from https://www.usagainstalzheimers.org/our-enterprise/CEOi
The Global CEO Initiative on Alzheimer’s Disease (CEOi), founded in 2013, is an organization of private sector leaders who have joined together to provide business leadership in the fight against Alzheimer’s. It is coordinated by UsAgainstAlzheimer’s. Members include healthcare companies, such as AbbVie and Roche, and other industry giants, such as Bank of America.
Alzheimer’s Association. (2020). ALZConnected: Caregiver forum. Retrieved from https://www.alzconnected.org/discussion.aspx?g=topics&f=151
The Alzheimer's Association offers this free online community for people affected by Alzheimer's or other forms of dementia, including caregivers. It provides a window into challenges of living with the disease and support from people going through it.
WHO (n.d.). iSupport for Dementia. Retrieved from https://www.isupportfordementia.org/en
iSupport is an online training program developed by the World Health Organization (WHO) to support caregivers of people living with dementia. It provides information about how to provide quality care and deal with challenging behaviors. The current version of the site is designed for field testing and demonstration purposes.
Senior Living Residences (2019). Dementia friendly communication tips. Retrieved from https://www.seniorlivingresidences.com/app/uploads/2019/12/DFComm-CommTips-1.pdf
This one-page document offers tips on how to communicate with people exhibiting signs of dementia. It illustrates how body language, tone and visual cues can be used to communicate kindness, compassion and understanding.
Wray, A. (2020). The dynamics of dementia communication. Oxford University Press.
This book examines why it is common to feel awkward, confused or irritated when talking with a person living with a dementia. In addition, it outlines which approaches to communication work best and why.
Dementia Alliance International. (2015). What is dementia friendly? Retrieved from https://www.dementiaallianceinternational.org/what-is-dementia-friendly/
This resource describes the Alzheimer’s Society UK’s Dementia Friends program and discusses the organization's goal of transforming the way the world thinks, acts and talks about dementia. It maps out small steps anyone can take to improve the lives of people with dementia and their families, friends and supporters.
Dementia Friendly America. (2018, May 14). Dementia Friendly America introduction [Video]. YouTube. https://www.youtube.com/watch?v=dFXe3A3lvg4
This video provides an introduction to Dementia Friendly America, which is leading a movement to more effectively support people living with dementia and their families. Working through local affiliates, DFA catalyzes dementia friendly community initiatives.
Soltzberg, B. (2019, Nov. 7). Memory cafes: Making space for dementia and joy [Video]. TEDxWaltham. https://www.youtube.com/watch?v=vje71rXP8Z0
Soltzberg, director of the Alzheimer’s/Related Disorders Family Support Program at Jewish Family & Children’s Service in Waltham, Massachusetts, showcases memory cafes as safe places for people with and without dementia to experience connection, creativity, and joy. A memory cafe is a social space for people living with memory loss, their families and caregivers. Memory cafes originated in the Netherlands in the 1990s and have been replicated in the U.S.
Turner, N. and Morken, L. (2016). Better together: A comparative analysis of age-friendly and dementia friendly communities. AARP. Retrieved from https://www.aarp.org/content/dam/aarp/livable-communities/livable-documents/documents-2016/Better-Together-Research-Report.pdf
In this AARP report, age-friendly and dementia-friendly community initiatives are compared and contrasted. International case studies offer insight into how the two might be integrated.
Van Amerongen, Y. (2018, November). The “dementia village” that’s redefining elder care [Video]. TEDWomen 2018. https://www.ted.com/talks/yvonne_van_amerongen_the_dementia_village_that_s_redefining_elder_care
When Yvonne van Amerongen, an occupational therapist and social worker, developed the Hogeweyk dementia care center in Amsterdam in 2009, it was seen as a bold departure from the norm. In this TED talk, she takes us on a virtual tour of what a nursing home based on freedom, meaning and social engagement could look like.
Alzheimer’s Society. (2017). Dementia-friendly business guide. Retrieved from https://www.alzheimers.org.uk/sites/default/files/2018-04/Alzheimer_s_Society_NEW_Business_guide_Web.pdf
This guide provides information about how dementia affects people’s experience of interacting with various organisations. It also outlines resources and tools to help businesses become more dementia-friendly.
Dementia Friendly America (DFA). (2018). Sector guides. Retrieved from https://www.dfamerica.org/sector-guides
As part of its nationwide effort to improve daily life for people with dementia, DFA offers sector-specific tips and videos for the following industries and stakeholders: businesses; restaurants; retailers; banks and financial services; legal and advance planning services; health care; first responders; pharmacies; faith communities; libraries; community services; local government; and transportation.
Carder, K.L. (2020). Nurturing a dementia-friendly church. Leading Ideas. Retrieved from https://www.churchleadership.com/leading-ideas/nurturing-a-dementia-friendly-church/
In this article, retired United Methodist Bishop Kenneth Carder considers how churches can better serve dementia patients and their families. Topics discussed include adult day care, respite care, meal delivery and home visits.
Jewell, A., & Kitwood, T.M. (2011). Spirituality and personhood in dementia. London: Jessica Kingsley Publishers.
This book discusses the role of a dementia patient's spiritual life in providing a sense of identity and resource for coping. It takes an inter-disciplinary approach to spirituality, including chapters on Christian and Buddhist perspectives, interfaith relationships and patients not part of any faith tradition.
Alzheimer’s Society. (2018). Dementia-friendly retail guide. Retrieved from https://www.alzheimers.org.uk/sites/default/files/2019-07/AS_NEW_DF_Retail_Guide_Online_09_07_19.pdf
This guide is designed to help retail organizations become more dementia friendly. It provides guidance on improving employee understanding, store environments and facilities to support dementia patients and their caregivers. An Alzheimer’s Society survey in 2013 showed that nearly 80% of people with dementia identified shopping as their favorite activity.
AARP (2019). Deciphering dementia at your financial institution. Retrieved from https://www.aarp.org/content/dam/aarp/ppi/banksafe/pdf/2019/deciphering-dementia-banks.pdf
This AARP flyer helps banks recognize the signs of memory loss, provide better service and prevent the risk of abuse. It notes that three out of four people with dementia have difficulty using banks.
Brandon, P. (2017, October 17). Creating a dementia friendly bank. AGE-u-cate Blog. http://www.ageucate.com/blog/?p=1175
This blog post outlines steps banks can take to provide more dementia-friendly service. It lists warning signs that employees should watch for and processes that can be put in place, such as algorithms to detect changes in spending patterns.
Damon, C.C. and DiDonato, J. (2020, May 2). Dementia awareness for public libraries [Video]. YouTube. https://www.youtube.com/watch?v=kVNjCnNJ_xc
In this video funded by the Network of the National Library of Medicine (NNLM), Chris Damon and Jim DiDonato introduce NNLM dementia resources and share dementia-friendly practices for libraries. They also discuss recommendations from the ALA's Reference and User Services Association (RUSA).
Dickey, T. J. (2020). Library dementia services : How to meet the needs of the Alzheimer’s community (First edition). West Yorkshire, England: Emerald Publishing Limited.
In this book, Dickey presents an overview of Alzheimer's disease and the information needs of dementia caregivers. He outlines best practices, guidelines, and recommendations for serving dementia patients and their caregivers in the library setting, including specific information resources, communication strategies and programming ideas.