CAREGIVING: Support | Alzheimer’s / Dementia | Cultural | Creative Caregiving | Peace & Grace

 

Alzheimer’s Disease

What is Alzheimer’s?
Start with a basic understanding by watching five different short “animated, pocket film” to help understand the disease. Available to watch and listen in several different languages.
Learn more

 

Things to Do While Visiting Someone With Alzheimer’s Disease
A list of forty helpful and caring activities you can do when visiting someone with Alzheimer’s.
Read the article

Leading an Active Life with a Diagnosis of Dementia

 

The 36-Hour Day
A Family Guide to Caring for People Who Have Alzheimer’s Disease, Other Dementias and Memory Loss

by Nancy L. Mace, MA and Peter V. Ranins, MD, MPH
Now in its sixth editions, two professional in the field of memory loss take on the daily challenges of caregiving, long and short term planning, insurance issues, palliative and hospice care, and more. Constructive and compassionate advice that will help any caregiver function well and feel more secure in their role.
Find the book at your local library or  order it online

 

Learning to Speak Alzheimer’s
by Joanne Keonig Coste
A book of practical tips to cope with the diagnosis, help the patient talk about the disease, face the issues of driving deal with wandering, paranoia and aggression and more.
Find the book at your local library or order it online

 

 

 

Creating Moments of Joy Along the Alzheimers Journey
by Joann Brackey
Using stories, humor and practical advice, the author focuses on creating joyful moments within the often long and trying days of Alzheimer’s and dementia patients.
Find the book at your local library or order it online

 

 

 

Ten Thousand Joys and Ten Thousand Sorrows
A Couple’s Journey Through Alzheimer’s

by Olivia Ames Horlitzelle
Gather support, inspiration and understanding from this warm narrative of a difficult journey turned into a life affirming experience.
Find this book in your local library or order it online.

 

 

My Life Rearranged
by Susan G. Miller
The author shares her ecpeiernce of decades of caring for family members with Alzheimer’s disease, giving voice to what many caregivers think but are reluctant to admit including the isolation and loneliness of caregiving, love , loss responsibility, duty and self preservation among many topics. beautifully written
Find the book in your local library or order it online

 

Namaste – a Unique Care Program for Alzheimer’s Patients

TED Talk
Namaste Care Program

by Joyce Simard, MSW
A caring program for people with very advance dementia developed by Joyce Simard, MSW, an adjunct professor at the School of Nursing and Midwifery in the College of Health and Science University of Western Australia. Listen as she describes the phenomenal success of Namaste Care and how it helps individuals with advanced dementia.

 

The End-of-Life Namaste Care Program for People with Dementia 2nd Edition
by Joyce Simard MSW
This innovative care program blends nursing care and meaningful activities to promote peaceful and relaxing end-of-life experiences for older adults with late- stage dementia. The first program created specifically for this hardest-to-serve population, Namaste care also meets the latest regulatory guidelines for person-centered activity programming. With this practical guide, skilled nursing
facilities, assisted living settings, memory care communities, and hospices can easily and affordably implement a Namaste Care program to not only improve resident quality of life but also to increase family involvement and strengthen staff morale.
Find this book in your local library or order it online.

Alzheimer’s Resource Organizations

Alzheimer’s Speaks
An Alzheimer’s resource site with a film on dementia.

Alzheimer’s Association
Comprehensive resources on many aspects of Alzheimer’s.

Safe Return
A service developed by the Alzheimer’s Association and the MedicAlert Foundation to provide location tracking for Alzheimer’s patients who may wander and get lost.

Art & Alzheimer’s or Dementia

The Art of Alzheimer’s
An Alzheimers patient finds expressions of joy when painting by Marilyn Rachel

Find even  more resources on the benefits of art for Alzheimer’s and Dementia patients

under the  Creative  Caregiving – Art section of this website.  Click HERE

Alive Inside: A Story of Music & Memory

The Power of Music — to reach people with Alzheimer’s and Dementia 

Watch the trailer   Visit the Website:

 

Dementia

The Dementia Handbook
How to Provide Dementia Care at Home

by Judy Cornish
The author addresses the fact that stress and depression as common occurrences among caregivers of loved ones with dementia to Alzheimer’s disease. She explains how to make interactions easier and more positive, how to build a sense of security for all involved and how to work within and around diminishing mental capacity.
Find the book at your local library or  order it online

 

 

An Unintended Journey:
A Caregivers Guide to Dementia

by Jane Pagoda Shagam
An experienced medical and science writer, the author discusses the basics of dementia as a brain disorder, its accompanying behaviors, how it is diagnosed, the stages of the disease and the legal aspects of caring for a person with dementia. Many other topics are covered. Worksheet and Frequently Asked Questions are helpful

Find it at your library or order it online

 

 

Dancing With Elephants
by Jerem Sawatsky
Insightful interviews with compassionate experts and guidance living with chronic illness.
Find this book in your local library or  order it online

 

 

 

Healing Dementia
by Kyrie S Carpenter

Too often people with dementia are portrayed as “lost” to an incurable disease and therefore lost to us. This book offers a deeper and more intuitive exploration of cognitive change caused by dementia.

Find this book in your local library or  order it online

 

Leading an Active Life with a Diagnosis of Dementia
by Susan b Garland
A moving personal account of one woman’s determination to life life to the fullest even as she experiences dementia.
Read the article

Person Centered Matters

This video beautifully portrays the lives of 5 people living with dementia and shows how person-centered care helps them live meaningful lives.

Person-centered care helps make life better for someone living with dementia and for those who care about them.

Dementia Resource Organizations

Dementia Society of America
The Dementia Society of America is a nonprofit organization dedicated to raising awareness and educating the public on a wide spectrum of dementia-related conditions. The DSA’s mission is to enhance quality of life for those living with dementia, caregivers, and the community.

Dementia Action Alliance
The Dementia Action Alliance USA is a non-profit national advocacy and education organization of people living with dementia, care partners, friends and dementia specialists committed to creating a better country in which to live with dementia.

Lewy Body Dementia Association
An organization devoted to information on this particular type of dementia.

End-of-Life Care Policies for People With an Intellectual Disability
Minnesota Psychiatric Directive

Help From Technology For Those With Dementia
Aging in Place Technology Watch
Download the article.

Advance Care Planning – Vitally Important

for Alzheimer’s for Dementia Patients

Advanced Dementia: A Guide for Families
Institute for Aging Research
Created by an interdisciplinary team from Hebrew SeniorLife Beth Israel Deaconess Medical Center, this informative document is helpful for family members and individuals responsible for making health care decisions for patients with advanced dementia.
Download it free from Institute for Aging Research website.

 

Your Conversation Starter Kit for Families and Loved Ones of People with Alzheimer’s Disease or Other Forms of Dementia

This excellent guide helps families and caregivers begin essential end of life conversations with a loved one or patient who has Alzheimer’s or dementia.

Download it  free from the Conversation Project website.

 

 

The Dementia Directive
Dr. Barak Gastner created a no-cost Advance Directive specifically for people with Alzheimer’s or dementia. In easy to understand language it outlines stages of mild, moderate and severe dementia and asks user to choose what type of care he or she would like or not like to have at the various stages of mental impairment.
Learn more

End of Life Washington
Resources and information focused on specific needs for Advance Care Planning for people with Alzheimer’s and Dementia
Learn more

See also: Advance Care Planning

The Health Care Agent’s Role

for Alzheimer’s & Dementia Patients

Continuing the Conversation on end of life care wishes with loved ones, Agent and all treating physicians is so very important as conditions and symptoms change in a person with either Alzheimer’s or dementia. Keeping everyone on board and up to date will go a long way  in helping to achieve a more peaceful passing.

Help for Healthcare Agents
If you are the caregiver for a person with Alzheimer’s or other forms of dementia but you are not the patient’s Health Care Agent (proxy), it is essential that the Agent be kept up to date with the person’s mental condition. The Coalition for Compassionate Care of California has an excellent guide title: Help for Healthcare Agents.
Free PDF download

See also:   Informed Medical Decisions

Detecting Early Stage Alzheimer’s or Dementia

SAGE an at Home Test to Detect the Beginnings of Alzheimer’s and Dementia
Ohio State University – Wexner Medical Center
The Self-Administered Geroncognitive Exam (SAGE) is designed to detect early signs of cognitive, memory or thinking impairments. It evaluates your thinking abilities and helps physicians to know how well your brain is working.
Learn more

When to Stop Driving

How do we know when we are no longer driving safely driving or whether our mental skills are diminished beyond what is normal for our age? Here are a few resources to help sort this out.

Driving Information for Senior
Self Rating Tool for Senior Drivers 65+
Check Your Performance

American Automobile Association
Read the articles