resources for caregivers of dementia patients

Dementia - an umbrella term for a number of diseases estimated to affect over 44 million people worldwide.

Alzheimer's and Dementias - information from the Alzheimer's Association:

Types of dementia

5 Early Signs Of Dementia (And Why Everyone Should Know Them)

AARP: Disrupt dementia

Caregiving resources from ARP

caregiving guide from AARP

Resources for People with Alzheimer's, Family, & Clinicians, Kenneth S. Pope, Ph.D., ABPP

collected resources, advice and information for caregivers

Fact sheets and tips for caregivers from the Family Caregiver Alliance

Alzheimer's Disease: Help for Caregivers - brief pamphlet from Alzheimer's International for caregivers of people with a range of dementias

holiday stress and caregiving; search including multiple resources, suggestions and advice for caregivers

Dementia Is Getting Some Very Public Faces: New York Times article by Paula Span. High profile people speak out about their own dementia diagnosis.

A Photographer Turns A Lens On His Father's Alzheimer's via NPR; photos and narrative describing one man's means of understanding his father's disease and life.

A Reporter at Large, The New Yorker October 8, 2018 The Comforting Fictions of Dementia Care: Many facilities are using nostalgic environments as a means of soothing the misery, panic, and rage their residents experience. By Larissa MacFarquhar

articles in the New York Times related to dementia

Oliver Sacks: The Healing Power of Gardens - how access to gardens can help people with a range of neurological disorders, including variying dementias

resources on arts and dementia

Living Words Arts & literature UK-based charity, working with people experiencing a dementia, isolated individuals & communities

- the allotment of time, chapbook produced by A Life More Ordinary project, incorporating poems, cartoons and photos

- From the negative to the positive publication of photography, cartoons, and poems that express thoughts, hopes and experiences of people living with dementias, part of the 'Improving the Experience of Dementia and Enhancing Active Life'

- A Grand Day Out; third in the series of chapbooks

Study: Memories of music cannot be lost to Alzheimer's and dementia; April, 2018.

The Alzheimer's Project; HBO 2009 documentary, following caregivers and those they look after, with a focus on the work and activity of caregivers in multiple contexts.

On B. Smith, Husband Dan Gasby and the Backlash over Moving on When a Spouse Has Alzheimer'sFebruary 12, 2019, piece on how families change, adapt, support, expand

video resources

Alive Inside, documentary following healthcare visionaries, demonstrating music's ability to combat memory loss and restore a sense of self to those suffering from it.

interview with Ric Gomez, bringing to light questions, doubts and issues experienced by many caregivers, if not all of us.

Dementia with agitation; strategies for understanding and responding to agitation

VJ and Chuck, the story of VJ and Chuck Anastasia's struggle with VJ's disease. One of many resources found at the Association for Frontotemporal Degeneration's (AFTD) website.

Support the person with dementia: The role of meaningful activities; how understanding a patient's interests and strengths can guide decisions about how the patient might be engaged in various sort of activities. (from the coursera course, Living with Dementia: Impact on Individuals, Caregivers, Communities and Societies by Johns Hopkins University, listed below)

from that same course: Living with dementia as a family caregiverand using the physical environment to support quality of life

Teepa Snow person-centered care - workshops and resources -- Teepa Snow's Positive Approach to Care Channel

online courses

The online courses listed below will help you understand symptoms of dementia; how dementia affects the brain, memory and language; and also provide information about less common forms, such as familial Alzheimer's disease and dementia with Lewy bodies.

Care for people with dementia

Whether you're a professional or family carer, these dementia courses will help you better understand the person you're caring for, and offer best practice advice on managing challenging behaviour and diffusing stressful situations. They will help you stay connected with your loved one with enhanced communication skills.

Living with Dementia: Impact on Individuals, Caregivers, Communities and Societies, free to audit through Coursera at

online courses from FutureLearn: dementia

online courses offered through the Alzheimer's Association

additional resources

8 Pillar Model of Community sets out an comprehensive and evidence-based approach to the integrated support of people with dementia living at home or a homely setting during the moderate to severe stages of the illness.

An app from a British group working with caregivers - easiest to download from the website itself:

infographic: caregiver nation; from Senior Link as part of national caregiver month

trauma lives in the body - affecting patients and carers. Bessel Van Der Kolk's book, The Body Keeps the Score, describes how trauma lives in our bodies. Read and excerpt

Legal/financial planning or people with Alzheimer's disease

Honoring Choices; Massachusetts-based resources for care and long term planning with useful applications beyond the state

Legal/financial planning or people with Alzheimer's disease

National Institute on Aging: Advance Care Planning: Healthcare Directives

May 22, 2019