Caregiving Resources

Caring for Someone With Dementia

There are many (many!) sources of advice on how to care for people with dementia - here are some of the most complete and expert resources.

The Alzheimer's Association offers a wealth of information about this disease, links to help and support, mini-courses for caregiver training, and good advice. Portions of their material is available in Spanish.

The National Institute on Aging's webpage for caregiving for Alzheimer's disease and related dementia coffers a wealth of information, too.

The Family Caregiver Alliance (as the name suggests) is focused on supporting family caregivers and care partners. The first link below is available as an audio recording as well as printed text.

PlaneTree Health Library's online collection for Better Communication with Health Professionals includes useful tools to build question lists (in preparation for appointments), including this interactive list builder specifically for dementia patients and their carers:

AARP's webpages offer practical advice for caring for someone with dementia.

Types and Stages of Dementia (Not All are the Same)

Mild Cognitive Impairment (MCI) does not inevitably lead to Alzheimer's or other types of dementia - and we can take steps to counteract it.

While there are different models at present for how dementia progresses, overall there's consensus that the diseases that cause dementia go through stages, and people with dementia will have different needs over time.

Also, there are significant differences between the different diseases that cause dementia (Alzheimer's, Vascular Dementia, Dementia with Lewy Bodies, and Frontotemporal Lobe Dementia are the most common).

Dementia can Change Personality and Relationships

Dementia is worse than just memory loss and loss of communication skills. People can become far more aggressive and irritable, and their judgment can become faulty, to the point that they can no longer safely take care of themselves. Concern, fear, and anxiety can lead to paranoia, and hallucinations or false memories can further complicate relationships. It may help to identify behaviors that are caused by the disease, and not just "getting old".

Of course, it's hard to give up independence, even if it's clear that the disease has reached the point where loved ones have to step in to help and protect. If it's possible for the person with dementia to make a care plan together with their care partners, that's deal - but even in a less-than-ideal world, these planning resources can help.

AARP's Prepare to Care Guides are available in different languages and for different family circumstances. Also be sure to look through the other resources in the other sections of this Caregiving Guide and in our Later Life Planning Guide.

Burden on Caregivers

Caring for someone with dementia can be especially hard on the caregivers, physically and emotionally. Please take a look at the resources in this guide under Caring for the Caregiver for support and suggestions on how to get respite care. These dementia-specific resources can also be helpful.

Videos may offer more support with many behavioral issues in dementia (such as aggression, agitation and anxiety, paranoid thoughts, repetitive actions, sleep disorders, not eating, wandering and home safety, etc.)  than simply reading about these issues. The Geriatric Medicine and Gerontology Programs at UCLA's Geffen School of Medicine have created a series of caregiver training videos, and the Family Caregiver Alliance's Youtube channel offers links to similar training and informational videos.

Coming to the End of Life With Dementia

While we focus on what's happening in the brain when someone has been diagnosed with one of the forms of dementia, it's important to know that dementia affects many parts of the body. Here are some common experiences towards the end of someone's life with this one of these diseases.

(For more information about hospice and palliative care,  see our webpage for Later Life Planning.)