Patrons with Alzheimer’s and Related Dementias

The Alzheimer’s and Dementia Toolkit equips library staff with strategies for respectfully supporting patrons experiencing memory loss, fostering inclusive services, partnerships, and programs that meet the evolving needs of individuals and caregivers.

Definitions

Dementia: general term for loss of memory, language, problem-solving and other thinking abilities that are severe enough to interfere with daily life (Alzheimer’s Association, 2022).
Alzheimer’s disease: a type of dementia that affects memory, thinking and behavior. Symptoms eventually grow severe enough to interfere with daily tasks (Alzheimer’s Association, 2022).
Frontotemporal dementia: a rare form of dementia that tends to occur in people younger than 60. It is associated with abnormal amounts or forms of the proteins tau and TDP-43 (National Institute on Aging, 2021).
Lewy body dementia: a type of progressive dementia that leads to a decline in thinking, reasoning and independent function because of abnormal microscopic deposits that damage brain cells over time (Alzheimer’s Association, 2022).
Mixed dementia: a condition in which brain changes of more than one cause of dementia occur simultaneously (Alzheimer’s Association, 2022).
Vascular dementia: a form of dementia caused by conditions that damage blood vessels in the brain or interrupt the flow of blood and oxygen to the brain (National Institute on Aging, 2021).

Quick Tips

Treat people with Alzheimer’s or related dementia with the same respect and consideration as other patrons.
Be aware of the wide range of behaviors associated with Alzheimer’s and related dementia issues and allow time to meet the needs of the patrons.
Form partnerships with residential care facilities, agencies, professionals, and self-advocates to assess and meet the needs of people with Alzheimer’s and related dementia.

Overview

Dementia is an umbrella term used to describe a number of diseases. It isn’t a specific disease, but rather a group of symptoms affecting memory, thinking, and social abilities severely enough to interfere with daily functioning. Dementia ranges in severity from the mildest stage, when it is just beginning to affect a person's functioning, to the most severe stage, when the person must depend completely on others for basic activities of living. Daily functions include keeping track of personal items, paying bills, preparing and eating meals, remembering appointments, and traveling for errands.

According to the National Institute on Aging (2021), Dementia is more common as people grow older (about one-third of all people age 85 or older may have some form of dementia), but dementia is not considered a normal part of aging. “Normal” aging may include age-related memory concerns, like forgetting the name of an acquaintance or misplacing your house keys occasionally, but dementia is caused by a disease impacting the brain.

Data

According to the World Health Organization (2021), 55 million people are estimated to have dementia and nearly 10 million people are diagnosed each year. Total dementia cases are estimated to be at 77 million by 2030 and 139 million by 2050. Alzheimer’s disease is the most common form of dementia, impacting between 60-80% of dementia cases. Alzheimer’s typically impacts adults aged 65 and older, but can start younger (known as younger-onset Alzheimer’s). Other forms of dementia include dementia with Lewy bodies, vascular dementia, frontotemporal dementia, and dementia from more than one cause.

The risk factors for dementia developing are vast. Age is the most common risk factor for dementia followed by family history of dementia. Brain injuries, such as traumatic brain injuries or stroke, can also lead to dementia development.

Trends

Staff training is an important aspect to ensure staff are effectively assisting patrons with dementia. The Network of the National Library of Medicine offers many different training opportunities for staff in the area of health information literacy and working with patrons with different health needs. Niche Academy hosts monthly webinars on different topics. They have a recording of their program Library Dementia Services from November of 2021 available.

Providing programming for individuals affected by dementia can be a way to engage community members. Programs include workshops on brain health, meditation, art & music and “Memory Cafes” American Libraries’ Magazine blog (2020) provides some resources for developing programs in the library.

Resources for Librarians

Guidelines for Library Services to Persons with Dementia (PDF)Guidelines for Library Services to Persons with Dementia - created by the International Federation of Library Associations and Institutions (IFLA) to address the needs of people with dementia through a global lens.
Keys to Engaging Older Adults (PDF) - created by the ALA Office for Diversity, Literacy and Outreach Services in response to the concerns of librarians across the country who provide services for the growing numbers of older adults in their communities
Library Dementia Services by T.J. Dickey (2020) 978-1-83867-694-0. Summary: There are 50 million people globally living with Alzheimer's disease and related dementias, and tens of millions of their caregivers. Library and information professionals must learn to assist those with dementia. This book explores best practice guidelines and concrete ideas for serving those with dementia and their caregivers.
Library Services for Patrons with Alzheimer's/Dementia - ALA’s Issues & Advocacy page on Equity, Diversity & Inclusion.
RUSA’s Reference Guidelines on Library Services to Older Adults (PDF) - promotes library services to seniors.
Serving Patrons with Dementia Group - a RAILS group that meet to discuss programs and services libraries offer to people with dementia and Alzheimer's disease

Resources for Patrons

Alzheimer’s Association - a source for statistics, information and support
Dementia Friends USA - a global movement that is changing the way people think, act, and talk about dementia
Family Caregiver Alliance - provides services to family caregivers of adults with physical and cognitive impairments, such as Parkinson’s, stroke, Alzheimer’s and other types of dementia
Tips for better communication - Rethinking your listening and speaking strategies can help you communicate with a person who has dementia

References

Alzheimer’s Association. (2022). What is Alzheimer’s Disease? https://www.alz.org/alzheimers-dementia/what-is-alzheimers

Alzheimer’s Association. (2022). What is dementia?

https://www.alz.org/alzheimers-dementia/what-is-dementia

Centers for Disease Control and Prevention. (2019, April 5). What is dementia? https://www.cdc.gov/aging/dementia/index.html

National Institute on Aging. (2021, July 8). What Is Alzheimer's Disease? National Institute of Health. https://www.nia.nih.gov/health/what-alzheimers-disease

National Institute on Aging. (2021, July 2). What Is Dementia? Symptoms, Types, and Diagnosis? National Institute of Health. https://www.nia.nih.gov/health/what-is-dementia

World Health Organization. (2021, September 2). Dementia. https://www.who.int/news-room/fact-sheets/detail/dementia

Toolkit updated by Lauren Kehoe of the Accessibility Assembly, June 2025.