Community Groups

COMMUNITY GROUPS AND CARE RESOURCES

 

Disease specific resources

1. Alzheimer’s Disease
   1. Alzheimer’s Association (Alz. Assoc.)
   2. Alzheimer’s Disease Fact Sheet (NIA)
   3. Caring for a Person with Alzheimer’s Disease 106 pages (NIA)
   4. Early-Stage Caregiving (Alz. Assoc.)
   5. Alzheimer's Forum

 

2. Corticobasal Syndrome and corticobasal degeneration
   1. Cure PSP (CurePSP)
   2. A Guide for People Living with PSP, CBD, and Other Atypical Parkinsonian Disorders (CurePSP)
   3. Corticobasal Syndrome (memory.ucsf.edu)

 

3. Frontotemporal Dementia
   1. The Association for Frontotemporal Degeneration (AFTD)
   2. Frontotemporal Disorders: Information for Patients, Families, and Caregivers (NIA)
   3. Behavioral Variant frontotemporal dementia (bvFTD) (memory.ucsf.edu)

 

4. Primary progressive aphasia
   1. Primary progressive aphasia (NAA)
   2. Aphasia support in California (NAA)
   3. The international PPA connection (IMPPACT)
   4. Primary Progressive Aphasia (memory.ucsf.edu)

 

5. Lewy Body Dementia
   1. What is Lewy Body Dementia (NIA)
   2. Lewy Body Dementia Association (LBDA)
   3. Advice for People Living with Lewy Body Dementia (NIA)
   4. How to Care for a Person with Lewy Body Dementia (NIA)
   5. Lewy Body Dementia: Information for Patients, Families, and Professionals 44 pages (NIA)
   6. Behavioral Symptoms in LBD (LBDA)
   7. Treatment and Management of Lewy Body Dementia (NIA)

 

5. Parkinson’s Disease
   1. Caring and Coping: A Caregiver’s Guide to Parkinson’s Disease 180 pages (National Parkinson’s Foundation)
   2. Advise for loved ones and caregivers (Michael J. Fox foundation)
   3. Worksheets and resources (Davis Phinney Foundation for Parkinson) Parkinson’s Foundation (PF)
   4. Parkinson's Disease Resources & Support (UCSF)

 

7. Progressive Supranuclear Palsy
   1. Cure PSP (CurePSP)
   2. A Guide for People Living with PSP, CBD, and Other Atypical Parkinsonian Disorders 118 pages (CurePSP)
   3. Progressive Supranuclear Palsy (memory.ucsf.edu)
   4. CurePSP How-To Videos

 

8. Vascular Dementia
   1. What is Vascular Dementia? (Alz. Assoc)
   2. The Brain Needs Blood: Vascular Cognitive Impairment (Neurology Now)

 

General resources for all patients

Caregiver Well-being:

1. Caregiving Stress and Burnout: Tips for Regaining your Energy, Optimism, and Hope (helpguide.org)
2. Taking Care of Yourself (Alz. Assoc.)
3. Taking Care of You: Self-Care for Family Caregivers (FCA)
4. Taking Care of Yourself: Tips for Caregivers (NIA)

 

Decision-Making:

1. Making Choices About Everyday Care (for families) (FCA)
2. Planning for Health Care Decisions (Care Eco)
3. Giving Someone a Power of Attorney for Your Health Care - DPOA-H Form (American Bar Association)
4. When Judgment and Decision-Making Is Impaired (Care Eco)

 

Long Term Care and Respite Options:

1. Adult Day Programs:
   1. Adult Day Programs (Care Eco)
   2. Choosing and Adult Day Program (Alz. Assoc.)
   3. California Association for Adult Day Services

 

2. Care Options:
   1. Caregiving at Home: A Guide to Community Resources (FCA)
   2. Finding Long Term Care for a Person with Alzheimer’s (NIA)
   3. Paying for Care (NIA)
   4. Long term care, myth vs. fact
   5. Long term care justice and advocacy
   6. Multipurpose Senior Services Program (MSSP)
   7. Assisted Living Waver (California Department of Health Services)
   8. Dealing with Increasing Care Needs (Care Eco)
   9. Introducing In-Home Care When Your Loved One Says ‘No’ (FCA)
   10. Tips for Introducing a New Caregiver (Care Eco)
   11. Tips for Introducing a New Home (Care Eco)

 

3. In-Home Care
   1. Hiring Caregivers: Some Important Things to Consider (Care Eco)
   2. Finding and Retaining Individual Paid Caregivers (Care Eco)
   3. In-Home Supportive Services Basics: Eligibility and Application Process - CA (Justice in Aging)
   4. In-Home Supportive Services Basics: Services - CA (Justice in Aging)
   5. Working with Home Health Aides (nextstepincare.org)
   6. California In-Home Supportive Services (IHSS) Program
   7. FCA Caregiving Videos
   8. Conversations with Caregivers Videos
   9. UCLA Dementia Care Training Videos
   10. Center for Creative Caregiving Videos

 

4. Residential Care Options
   1. Caregiving Doesn’t End When Your Loved One Moves (FCA)
   2. Choosing the Right Place (FCA)
   3. Housing Options (FCA)
   4. How to Choose a Nursing Home (CANHR)
   5. Visiting Someone in Dementia Care (FCA)

 

Driving:

1. Driving Safety and Alzheimer’s Disease (NIA)
2. Dementia and Driving (FCA)
3. Dementia, Driving, and California State Law (FCA)
4. Driving and Dementia (Alz. Assoc.)
5. Transportation alternatives (Care Eco)
6. At the Crossroads: Family Conversations about Alzheimer’s Disease, Dementia, & Driving 28 pages (The Hartford)

 

Family:

1. Caregiving with Your Siblings (FCA)
2. Helping Family and Friends Understand Alzheimer’s Disease (NIA)
3. Helping Kids Understand Alzheimer’s Disease (NIA)
4. Holding a Family Meeting (FCA)
5. Resources for Children (Care Eco)

 

End of Life Care:

1. Advanced Dementia: A Guide for Families 50 pages (Harvard Medical School)
2. Advanced Illness: Holding On and Letting Go (FCA)
3. Coping with Late Stage Alzheimer’s Disease (NIA)
4. Hospice Care for Patients with Dementia (Arizona Center on Aging)
5. Providing Comfort at the End of Life (NIA)

 

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