Caregiving for those with Dementia – Class Notes

This post will be of interest to those who are caring for people with dementia…

I attended the 4-week class on caregiving for those with dementia at Avenidas in Palo Alto this month (May ’06). The class, called “It Takes Two: Dealing with Dementia-related Behavior,” was run by the Family Caregiver Alliance (caregiver.org), an SF-based organization that offers classes, resources, and counseling to those throughout the SF Bay Area and nationally.

A Dementia Fact Sheet was handed out. It states:

“[The] term ‘dementia’ is used by the medical community to describe patients with impaired intellectual capacity… Signs of dementia include short-term memory loss, inability to think problems through or complete complex tasks without step-by-step instructions, confusion, difficulty concentrating and paranoid, inappropriate or bizarre behavior. Clinical depression also may accompany early signs of dementia.”

In the first class, we discussed dementia. I think I wrote these statistics down correctly:
* 10% of people older than 65 have AD or dementia
* over the age of 85, almost 50% of the people have AD or dementia

There are reversible dementias and irreversible ones. The importance of getting a diagnosis was made clear by the fact that some dementias are reversible. In the first class, different diseases with dementia components were discussed, beginning with AD. LBD and PSP were both discussed.

Though it was not distributed, I think this publication summarizes the information presented the first day of class:

www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=569

Lots of FCA-authored materials were handed out at the first class, including:

1. Dementia – Fact Sheet: I can’t find this on their website. It lists possible causes of dementia (deteriorating intellectual capacity) including reactions to medications, emotional distress, metabolic disturbances, nutritional deficiencies, etc.

2. Alzheimer’s Disease – Fact Sheet: this is available on their website at:

www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=567

The fact sheet breaks AD into three stages and describes the dementia-related behaviors of each stage.

Note that the Dementia with Lewy Bodies – Fact Sheet on their website is woefully out of date. I’d suggest getting the latest info from the LBDA website. In particular, this brochure is excellent for caregivers, MDs, etc:

www.lewybodydementia.org/docs/brochure/3_brochure.pdf

3. Tips for Interacting with a Person with Dementia: I can’t find this on their website. The tips are:
* Reassure, reassure, reassure
* Try to remain calm
* Do not disagree with made up stories
* Give compliments often
* Respond to the person’s feelings, not their words
* Use distractions
* Do not try to reason with the person
* Give yourself permission to alter the truth
* Avoid asking questions that rely on short term memory
* Break down all tasks into simple steps
* Respond calmly to anger, don’t contradict or argue

4. Tips on Interacting with Persons with Alzheimer’s Disease or other Dementias (pages 1-3) and Qualities of Friendship in Relation to Someone with Dementia (page 4). I can’t find this on their website.

5. Principles for Understanding and Communicating with a Person with Dementia. I can’t find this on their website. The five principles are:
* Knowing and accepting the cognitive limitations of the person will help you set realistic expectations of the person’s behavior.
* Understand that OUR thoughts, attitude, and actions significantly impact on the behavior of the person with dementia.
* Recognize that behavior, even in a confused person, more likely results from a cause. It is triggered.
* Learn that to enhance communication with a person with dementia requires a commitment to remain “connected” regardless of the content of the conversation.
* Understand that changing behavior takes time, effort, and patience. Reward yourself often for working towards change.

6. A Reference List for Families and Professionals – Caring for Individuals with Dementia: I can’t find this on their website. It’s a list of books on family caregiving and dementia care.

7. Caring for Adults with Cognitive and Memory Impairments – Fact Sheet: this is available on their website at:

www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=392

The other three classes are hard to summarize. Basically we discussed and role-played communication strategies based on the tips and principles listed above.

This class will certainly be taught again in the Bay Area. It was taught in April in SF, I believe. And then the May class was in Palo Alto. My guess is that it will be taught again in the fall. You can check in periodically with the FCA’s website listing of classes to learn what’s available:

www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=1001

Regards,
Robin