Until a dementia cure, there's education, tools and resources

For most causes of dementia, there is no cure – not yet. The reality is that if you are diagnosed with dementia, it will not go away…ever. Not only is there no cure, there is limited treatment available. So in most cases, dementia is a chronic symptom of a chronic disease.

With no cure and no treatment, the opportunity becomes management.  How can the patient, caregiver(s), family members and friends manage the disorder so quality of life can be maximized for all involved?

Initially, this seems logical and straightforward, doesn’t it? Oh, if it were just so.

First, there is the fear and the stigma of dementia. The patient feels the fear as do all others mentioned above.

“How do I act toward Bill now that he has dementia?”  “How will I maintain my independence if I have to stop driving?”  “I’d better stay away from Sheila.  I don’t want to catch her dementia.”  “I am not comfortable around dad anymore.”

Second, is the emotional and physical toll on patients and caregivers.

Third, is the lack of awareness by the patient, caregiver(s), family members and friends about how to manage dementia.

What is the first thing you and/or your caregiver would do if you were diagnosed with dementia?  (This would be after the initial shock wears off and you go through the stage of denial.)  You would call your provider or search the Internet for information to educate yourselves and to find tools and resources to help your situation.

Education, tools and resources are the keys to managing dementia.

Where does one find these? Herein lies the dilemma. You can get some information your memory care center, some from the Alzheimer’s Association, some from the Internet, some from blogs, etc.

The positive reality is there is very good information by very knowledgeable and caring people available. However, the information is fragmented.

In our research, we have not found a comprehensive AND user friendly source which provides national expertise, social interaction, and very specific local information - At least not in the US.  (See www.dementiaweb.org.uk for an example outside the US.)

So what education, tools and resources should be included in a comprehensive platform? If I put myself into the position of someone having received the call that Dad has dementia, I would want:

Education – What is the prognosis?  What should I expect?  What medications are available? What can I do?  How will the progression be, and what should I do throughout this digression?

Tools – What technology is available to assist? What techniques are there to handle different situations?  How do I take the car keys away?  How do I get a break?

Resources – What support is available for my dad and my family?  What are the financial implications and how does one “get affairs in order”?  Adult Day Services?  Home Health?  Brain games?  Insurance questions?  Who can I talk to?

I am only scratching the surface on this blog.  What else is needed?