Grief is the constant yet hidden companion of Alzheimer's disease and other related dementias. ~ Kenneth J. Doka
A hospice colleague writes: We are preparing a program on issues of caring for those with dementia (and their caregivers) who are bereaved, as well as caring for the bereaved whose loved ones had dementia. If you find any relevant material on these issues, I would appreciate anything you can share.
My response: Below are listed dozens of resources that can inform and help. Bear in mind, however, that these are offered only as guides, since each person with dementia is unique, and individual circumstances will vary. As always, if readers know of any items you'd like to see added to the list, please feel free to leave a comment, below.
- A 2021 Guide to Alzheimer's and Dementia
- A Case for Bereavement Support Groups - Alzheimer's and Dementia
- A Guide to Alzheimer's Caregiving
- Addressing Ambiguous Loss and Grief As A Caregiver
- After Caregiving Ends (Article by Judy Tatelbaum)
- After Alzheimer's: Facing The Grief
- AGIS: Assist Guide Information Services - Eldercare Resources
- Aging Life Care Association
- Aging Parents and Your Emotional Well-Being
- Aging With Dignity
- Alzheimer's Association
- Alzheimer's Association CareFinder™ Service
- Alzheimer's, Cancer and Hospice
- Alzheimer's, Dementia and Grief
- Alzheimer's Disease
- Alzheimer's Disease and Related Dementias | National Institute on Aging
- Alzheimer's - 'It's an odd thing to grieve for someone who is still alive'
- Alzheimer's Project: HBO Documentary Series
- Ambiguous Loss and Grief in Dementia: A Resource for Individuals and Families
- Arts and Crafts for People with Alzheimer's
- Benefits of Early Detection in Alzheimer's Disease
- Blog, The Estate Lady Speaks: Compassionate Advice for Dealing with a Lifetime Accumulation of Stuff
- Building Friendships Through Alzheimer's Buddies
- Caregiver Confessions
- Caregiver's Companion (Book by Carolyn A. Brent)
- Caregiver's Guide to Understanding Dementia Behaviors
- Caregivers Can Live Well with Dementia, Too
- Caregivers Find Your Tribe: The Power of the Caregiving Community
- Caregivers Struggle When Parents Age (Article by Ellen Besso)
- Caregivers Support: Belief Net
- CareGiving.com
- Caregiving Articles by Carol O'Dell
- Caregiving: Facing the Challenges by Johanna Turner
- Caregiving In Serious Illness: Suggested Resources
- CaregivingOldGuy.website
- Caregiving and Loss: Family Needs, Professional Responses
- Caregiving.com: Helping You Help Aging Relatives
- Caregiving Links
- Caretakers: Dealing with Our Own Needs (Article by Stan Goldberg)
- CaringBridge: Free Personalized Web Sites to Support and Connect Loved One
- Caring for A Loved One Who Can't Communicate
- Caring for A Person with Dementia
- Caring for the Elderly - The New York Times
- CaringToday.com
- Coach Broyles' Playbook for Alzheimer's Caregivers
- Communicating with Alzheimer's
- Companioning the Dying: A Soulful Guide for Caregivers (Book)
- Connecting The Dots: Breakthroughs in Communication as Alzheimer's Advances
- Coping As You Anticipate a Loss (Article by Marty Tousley)
- Coping Strategies for Alzheimer's Disease Caregivers
- Dementia Grief: A Theoretical Model of A Unique Grief Experience
- Dementia Grief, Part 1: What Makes It Unique?
- Dementia Grief, Part 2: What Are The Process States?
- Dementia Grief, Part 3: The 3 Stages
- Dementia Patients and Grief
- Dementia Society of America
- Disability: Links to Resources
- Do I Need a Patient Advocate?
- Duet: Partners in Health and Aging
- The Dying Process: A Guide for Caregivers
- Dying Well, Defining Wellness through the End of Life: Dr. Ira Byock
- Easing the Toll of Anticipatory Grief: Advice for Alzheimer's Caregivers
- Empowering Caregivers - Choices, Healing, Love
- Elder Abuse Definition | Elder Abuse Prevention
- ElderCare Locator: Finding Community Assistance for Seniors (Nationwide)
- ElderCare ABC Blog: About Being Connected
- Elder Care: Alzheimers, Dementia
- Elder Care Made Easier: Doctor Marion Somers
- Elder Care Support System Tools for Family Caregivers
- Elder Rage, or Take My Father... Please!: How to Survive Caring for Aging Parents (Book)
- Emotional Renewal for Caregivers: Looking After Yourself While Helping a Loved One (CD)
- Facing Death and Finding Hope: A Guide To The Emotional and Spiritual Care Of The Dying (Book)
- Family Caregiver Alliance: National Center on Caregiving
- Family and Medical Leave Act of 1993
- Final Details: Taking Care of Business
- Final Gifts : Understanding the Special Awareness, Needs, and Communications of the Dying (Book)
- Financial Planning for Caregivers of Seniors Suffering Memory Loss
- For Families of Missing Persons by Marianne Dickerman Caldwell
- Gilbert's Guide: Expert Advice for and about Seniors
- Grief and Dementia
- Grief and Dementia | YouTube
- Grief and Dementia Care: Support for the Roller Coaster of Emotions
- Grief, Bereavement and Loss | Dementia UK
- Grief and Loss As Alzheimer's Progresses
- Grief and Loss in Chronic Illness
- Grief and Loss with Alzheimer's Disease and Dementia
- Grief For A Person With Dementia
- Grief Is A Struggle For Those Who Develop Dementia Early In Life
- Grief, Loss and Bereavement | Alzheimer's Society UK
- Grief, Loss and Bereavement Factsheet
- Grieving: Living with Dementia
- Grieving The Living: My Dad's Six Years with Dementia
- Gone without A Trace by Marianne Dickerman Caldwell)
- Helping a parent with dementia cope with the death of a spouse or sibling
- Helping Kids Understand Alzheimer's in Grandparents
- Helping People with Dementia Deal with Loss and Grief
- Helping People with Intellectual Disabilities Cope with Loss
- Helping Someone with Dementia to Eat More: 8 Practical Tips
- Home Modifications When Moving In An Elderly Parent
- How Do I Know You? Dementia at The End of Life
- How to Support A Grieving Person with Dementia
- "I'm So Angry That He's Sick"
- In-Home Nursing Care: All You Need to Know
- I Still Do: Loving and Living with Alzheimer's Dementia
- Leeza's Care Connection
- Liberating Losses: When Death Brings Relief
- Long-Distance Caregiving: How to Ensure Your Loved Ones are Safe at Home
- Loss and Bereavement In People With Dementia
- Loss and Grief in Dementia
- Making Rounds with Oscar
- Medicare Plans: Patient Resource Center
- MemoryCare.com
- Minimizing Grief for A Surviving Spouse With Dementia
- Mobile Apps for Alzheimer's Patients and Their Caregivers
- Pearl's Memory Babies
- Relentless Goodbye: Grief and Love in the Shadow of Dementia
- Review: The Role of Grief in Dementia Caregiving
- SeniorsMatter Resource Directory
- Spotting The Early Signs of Dementia
- Supporting A Person with Dementia During Grief
- The Alzheimer's Project: Caregivers
- The Forgetting: A Portrait of Alzheimer's
- The Complicated Grief of Dementia
- The Dementia Care Partner's Workbook: A Guide for Understanding, Education, and Hope
- The Intentional Caregiver: Caregiving Archives
- The Unexpected Journey of Caring: The Transformation from Loved One to Caregiver
- Tips for Caring for Patients With Dementia and Alzheimers for Nurses and Caregivers
- Understanding and Managing Loss and Grief: A Workbook for Dementia Caregivers
- Understanding How Alzheimer’s Disease Changes People— Challenges and Coping Strategies
- Virtual Resources for Older Adults During the COVID-19 Pandemic
- Voices of Experience: How to Survive Caring for Aging Parents
- What 12 years of early onset dementia taught me about grief, friendship, and myself.
- When a Loved One Has Dementia, Coping with Grief Can Be a Challenge for Family Caregivers
Related:
- Caregiving In Serious Illness: Suggested Resources
- Caregiving In Serious Illness: 8 Ways You Can Help
- In Grief: After Caregiving Ends, Who Am I?
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