A mind model (aka mind map) on a very important topic in the care of persons with dementia for caregivers and PWD.

Much is written about the responsibilities of caregivers to those family members and others for whom they provide support, care, quality of life, and safety.

Let’s flip the issue over.

I make these suggestions from the viewpoint of a psychologist/healthcare professional who has lived well with dementia for many years. These are general guidelines and do not apply to everyone or possibly to you. But if you can, do think about these suggestions for at least a little time.

In the earlier stages of dementia — while they still can — persons with dementia need to take responsibility for caring for themselves as much as they are able to while doing so safely and consistent with their medical treatment plan as set by a medical doctor or other licensed health care professional.

If you as a person with dementia can still do something safely — or part of it or even try to do a little of it to aid a caregiver — do it. Because you have had a diagnosis of dementia does not entitle you to request assistance when you do not really need it (as determined by you AND your caregiver and doctor). Dementia or any other medical diagnosis does not entitle you to control the life of another nor to ask things of them which are not necessary.

There are things that are not safe for a person with dementia to do even in early stages and you should NOT ever try to do so. Follow your doctor’s and caregiver’s instruction on this perfectly as your judgment may be impaired even though you can still perform many tasks.

And no matter what, you can always try to remember to smile, say thank you, and express gratitude. And try to remember to not be bossy, complain because you cannot have your way all the time (often for your own safety and quality of life), and to stay cooperative, grateful, as relaxed as possible, and aware of the needs of others. As the disease progresses you will be able to do less, but why are you entitled to expect to not help or have to do it yourself at times when you can still do some things safely and adequately albeit not perfectly or as well or as fast as you used to? Do what you can to help. Remember, you are still an adult, even though you have a neurodegenerative brain condition.

I have dementia. Often I need to be reminded to stop being a jerk or being demanding or not trying as hard as I should. I often get mad (who wants to hear it) but over my lifetime I have learned to reluctantly channel that anger into trying harder and when I can, I then do something I was avoiding, I find great feelings of satisfaction both that I can still do many things and also because I cut some pressure from the lives of others who spend much time and energy protecting and helping me when it is really needed.

One final note. This probably applies to only a few caregivers who will ever read this post but it needs to be said. No patient under care should EVER be punished in any way for ever failing to live up to any suggestions in this blog post and mind model.

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For a related post on caregiving (opens in separate window), click here.