Dr Rita Jablonski-Jaudon has a really nice article on 10 rules to follow in order to provide effective, compassionate, and comprehensive Alzheimer’s caregiving. Dr. Jablonski-Jaudon is an expert on Alzheimer’s care, and I have greatly respected her judgment over the decade I have known of her work.

The article may be accessed here. Clicking the link will open a new window.

I wondered if the information could be presented in a somewhat more compelling way visually as a mind model (AKA mind map) with a very large (some would say excessive) number of images embedded in the diagram.

So I tried this afternoon. I like the result; hopefully Dr Jablonski-Jaudon will also. Spend a few minutes looking at this and the images, and I suspect you may view caregiving in a somewhat different way.

Note that you should read the original short article either before or after looking at the mind map. There are some further explanations of concepts in the original piece.

Click on the image to expand it.

In many cases a person with dementia expresses herself with what she believes to be a very logical thought pattern that appears to a caregiver to be quite illogical. But if a person with dementia is expressing himself in a consistent but bizarre way, it might very much be indicative of a logic which — while unintelligible or not able to be decoded by a caregiver — has a consistency and repeatability that means that a person is communicating in a personally meaningful way.

A few thoughts in a mind model (AKA mind map) created by my own demented brain. The process of mind modeling is for me an alternate way of thinking and communicating that later permits me to translate the ideas and my (but possibly not your) logical network into words you might understand.

Please click on the image to expand it.

The backbone of the dementia care system is the relationship between a person with dementia and an unpaid family caregiver (often a daughter or aged spouse). The family caregivers often hold jobs and typically have a family of their own (frequently with young children). Weekends and evenings and vacations get “eaten up” by caregiving demands as do financial resources and interpersonal relationships with the caregiver’s friends, coworkers, and relationship partners.

At its best, the person with dementia and family caregiver partnership provides excellent care. At its worse (with the exception of a small percentage of cases of abuse or neglect possible in any care relationship), this is the best care system available to most of the population of elders and others with dementia and itself is a high-quality care system.

But the toll on the unpaid caregiver is huge.

In order to make keep this system viable, high-quality, accessible, and fair to all participants (especially unpaid caregivers), stipends and free training needs to be made available to family members. Whether such stipends come from general tax funds or the health insurances pool, if they are not made available, the system will collapse and the alternative will be lower-quality and much more expensive.

Wanna pay more and get less … destroy the system of family caregivers and PWDs by refusing to reimburse currently unpaid caregivers for their services and time and replace it with centralized facilities resulting in poorer care for elders at a higher cost. Paying family caregivers for their work with persons with dementia is not only the right thing to do, it is the cost-effective thing to do.

A mind model (AKA mind map) follows. Click on the image to expand it.

A related posting on caregiving may be accessed by clicking here.

The most cost-effective improvement that can be made to the global dementia healthcare system is to improve free online education modules for dementia caregivers.

Online caregiver and patient education is effectively free. Educational modules developed in countries leading the world in dementia care such as the UK, may be placed online and available to the rest of the English-speaking world within a day and available in translations and culturally-appropriate versions shortly after. No printing costs, no freight bills, and instant updates regularly.

Virtually all dementia caregiving is done without compensation by highly motivated family members who themselves have jobs, families, and other issues to attend to. Better caregiver education can hopefully make family caregiving more efficient and effective at least partially easing some of the huge burden of being a caretaker. Many people with dementia can, at least in the early stages of the disease, also be more independent with the support of appropriate training. Care can improve by supporting family caregivers and persons with dementia expanding their own self-care.

Unfortunately, existing materials on the Internet @#$%. These need to be overhauled now and updated frequently. Training dementia caregivers in basic principles and skills must be made more problem-solution based with caregivers trained to recognize specific problems and provide appropriate and effective interventions (including immediately moving the person with dementia into emergency medical care when needed). I find it interesting that there are thousands of books and websites on how to recognize and intervene in thousands of specific conditions with infants and young children but virtually no usable information online on to intervene when specific problems occur in people with dementia. A small amount of money (in the tens of millions of dollars or euros, not billions) could immediately upgrade the skills of literally millions of caregivers.

A word of caution. If a funding agency wants to get useful very specific and concrete educational materials for caregivers developed, do not make grants to a bunch of academic medical centers and academic research faculty. One reason the online educational models for dementia caregiving are so poor is that they are developed by academic medical faculty and the materials are usually not concretely clinical enough. Either get the materials developed in community medical and social care clinics, or make the grants to Schools of Nursing and Social Work where practical clinical tools for the community are valued and developed.

Click on the Mind Model to expand it.

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.

Click the image to expand.

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