The Alzheimer’s Association With seventy-four chapters across the US, the Alzheimer’s Association is the leading voluntary health organization in Alzheimer’s care. 

24-hr hotline for the Alzheimer’s Association In addition to the valuable information provided on their website, the Alzheimer’s Association has many resources for caregivers, including a free twenty-four-hour helpline.

Facts and Figures –      Alzheimer’s The Alzheimer’s Association provides an annual compendium of facts and figures about Alzheimer’s and other dementias.

Stages of Dementia Compassion & Choices outlines the seven stages of dementia (also see chapter 6).

Transitioning to a Care Facility Careforth offers a number of helpful tips for transitioning a loved one into a memory care facility.

Medical Aid in Dying For information about medical aid in dying, visit Death With Dignity.

California’s Medical Aid in Dying  More information on proposed changes in California’s End of Life Option Act.

End-of-Life Choices and Dementia For a 2024 summary of current ethical, legal, medical, and social considerations about people facing dementia choosing a hastened death, take a look at Facing Dementia: Clarifying End‐of‐Life Choices, Supporting Better Lives.

Swiss Organizations and Medical Aid in Dying Dignitas, a Swiss organization—and a few more recent international organizations, including Pegasos (also in Switzerland)—assists qualified people with dying and does not automatically exclude people with dementia, although they must retain the mental capacity to make their own medical choices.

Five Wishes Document A useful resource for starting a living will and considering end-of-life issues is the Five Wishes document. It is straightforward and presented in plain language, and it is legally valid in almost every state. There is a small one-time fee, but it is easy to update as circumstances change.

Finding an Estate Attorney Family Caregiver Alliance provides a guide for finding an estate attorney.

What is a Power of Attorney? The Consumer Financial Protection Bureau explains what a power of attorney is.

Do Not Resuscitate Orders An explanation of DNRs can be found on MedlinePlus.

A Dementia Addendum Template  This templat from Compassion & Choices is simple to use and free.

A Sample Dementia Addendum This sample is from Appendix B in Before I Lose My Own Mind.

Do Not Spoon-Feed Requests Vermont Ethics Network lays out some considerations on do not spoon-feed requests.

Tips for Family Meetings Family Caregiver Alliance offers some suggestions for having a family meeting: https://www.caregiver.org/resource/holding-family-meeting/.

A Scale for Stages of Dementia  For more descriptive details on the Global Deterioration Scale, take a look at this information from the Fisher Center for Alzheimer’s Research Foundation.

Self-Compassion See Kristin Neff’s work on self-compassion and learn about attending a virtual event or joining her self-compassion community.

Caregiver Health The Alzheimer’s Association has good coverage on caregiver health.

Tips for Caregivers and Caring for Yourself Alzheimers.gov offers tips for caregivers. Scroll toward the end for tips on how to care for yourself as a caregiver.

Caregiver’s Bill of Rights The Family Caregiver Alliance offers “A Caregiver’s Bill of Rights,” reprinted from Jo Horne’s Caregiving: Helping an Aging Loved One.

Alzheimer’s Medications The Mayo Clinic has a good primer on Alzheimer’s medications.

Also see chapter 10.

California Caregiver Resource Centers discusses how caregiving at or near retirement affects the caregiver.

On taking care of yourself as a caregiver

Alzheimer’s Medications The Mayo Clinic explains medicines used for dementia and how they work.

The Cost of Alzheimer’s Drugs KFF Health News details concerns about the cost of the immunotherapy drugs and how it will tax the Medicare system, increasing premiums.

Looking up Prescription Drugs I generally use RxList to look up prescription drugs and find out what they are used for and what the possible side effects and drug interactions are.

Discussion Guide for End-of-Life Wishes Final Exit Network provides a useful guide to discussing death, your end-of-life wishes, and the possibility of a chosen hastened death.

Compassion & Choices Website Compassion & Choices has good guides for considering end-of-life wishes.

Right to Die Societies The World Federation of Right to Die Societies.

Atrial Fibrillation & Dementia Risk A study from Kaiser Permanente indicates that A-fib may increase the risk for dementia.

Consequences of Medical Overtreatment AgingCare looks at the possible consequences of medical overtreatment in seniors.

Voluntary Stopping of Eating and Drinking Compassion & Choices, an organization focused on patient-directed end-of-life healthcare, provides useful written information about VSED as well as a video.

Voluntary Stopping of Eating and Drinking Final Exit Network provides a useful resource for those considering VSED.

Area Agencies on Aging On the USAging website, you can explore over six hundred area agencies on aging, which can be resources for financial assistance, direct service, and support care for the person with dementia and the caregiver.

Community Sources of Dementia Caregiver Support UsAgainstAlzheimer’s is working to create local faith-based and other community organizations as sources of dementia caregiver support groups.

Your Right to Refuse Medical Treatment The Vermont Ethics Network discusses important information on your right to refuse medical treatment.

Refusing Medical Treatment as Someone’s Healthcare Proxy Here are some considerations on refusing medical treatment as a healthcare proxy, also from the Vermont Ethics Network.