resources for caregivers of dementia patients

search for RI nursing homes 8 February, 2023


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


caregiver support resources from HopeHealth

Memory Cafes in Rhode Island and (virtually) beyond


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

Trump brags about his cognitive test. But for those with dementia, it's devastating.


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.

Patricia Hodge: about her husbandbeing diagnosed with dementia and how she navigated loss after he died in 2016.


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

As Cases Soar, 'Dementia Villages' Look Like the Future of Home Care NY Times article, July 3, 2023.

Why music causes memories to flood back by Marlene Cimons, February 26, 2023, Washington Post

With cognitive impairment, older adults struggle with - and face risks from - smartphones, computers - Washington Post, October 13, 2019

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

Books and Blogs for Caregivers, By Caregivers


resources on arts and dementia

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

Unique music therapy program brings people living with dementia together with students February, 2023, North Vancouver, BC, Canada

- 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.

visual arts programing for people with dementias: art museums offering opportunities for people with dementias to engage with visual art

Tony Luciani: A mother and son's photographic journey through dementia - TED talk, TEDx Cambridge, MA, 2018

A Valentine That Can't Be Sent; poem by Rosemarie Waldrop


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


'I knew the terror of lost time': how my father's dementia echoed my own alcoholism by Octavia Bright, 6 June, 2023 in The Guardian,29 May, 2023.

My father had dementia and I was his caregiver. Here's what I wish I had known by Cynthia Dearborn, in The Guardian,29 May, 2023.


video resources


How Rosalynn Carter reduced stigma around mental health and caregiving. PBS Newshour, May 30, 2023.

Brain Changes clear and explicit explanation of brain and behavior in people with dementia; part of Teepa Snow's Positive Approach to Care YouTube channel.

Elizabeth is Missing - brilliant, difficult, true rendering of dementia and its ravaging, internal logic and devestation

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 https://www.coursera.org/learn/dementia-care


online courses from FutureLearn:

https://www.futurelearn.com/courses/collections/dementiaUnderstand 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: http://www.cuppacare.com/

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


books

Started Early, Took my Dog by Kate Atkinson. A novel comprised of many moving parts and characters, one of whom lives with dementia that is beautifully rendered throughout the course of the narrtive.

The Last Ocean: A Journey Through Memory and Forgetting by Nicci Gerrard. After a diagnosis of dementia, the author's fther continued to live life on his own terms, alongside the disease. When an isolating hospital stay precipitated a turn for the worse, Gerrard recognized that it was not just the disease, but misguided protocol and harmful practices that cause such pain at the end of life, and was inspired to seek a better course for all who suffer because of the disease.

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 an excerpt https://www.psychotherapy.net/article/body-keeps-score-van-der-kolk.


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 for people with Alzheimer's disease

National Institute on Aging: Advance Care Planning: Healthcare Directives


COVID

Isolation may be a greater risk than COVID-19 for residents of Canada's nursing homes

In theory, residents of R.I nursing homes can have visitors. In reality, there are hurdles and heartache Amanda Milkovits Globe Staff, Updated July 30, 2020

Nobly fighting COVID in the real ground zero: A nursing home Providence Journal, June 13, 2020. COVID at Steere House, Providence, RI.

Create Safe Visiting for RI Nursing Home Residents

RI Action for Visiting Now



updated January 3, 2024