A new report has just been issued which will really make you think.

From the Nuffield Council on Bioethics in the UK:

There is no "miracle cure" just around the corner for dementia. And yet while the number of people suffering from the condition is increasing rapidly, there is a widespread lack of understanding about what people with dementia are capable of doing. This report concludes that we need to do more as a society to enable people to live well with dementia. Currently, they are not getting the support and respect that they need.

This report presents an ethical framework to help those who face dilemmas in connection with the everyday care of someone with dementia. The report forms the basis for a number of recommendations to policy makers in the following areas:

* Promoting autonomy and well-being through an ethical approach to dementia care,

* Including people with dementia in society,

* Making decisions about the care and treatment of people with dementia,

* Dealing with day-to-day ethical dilemmas in care,

* Recognizing the needs of caregivers.

See:

http://alzheimers.boomja.com/B...ues-quot-113474.html

Read the one-page summary and the "guide" to the report.

If you want more detail, there is an Executive Summary as well, and then the full, 210-page report.

I wonder how we get the Alzheimer's Association to look into this...

The focus on solidarity (I might be inclined to call it interdependence) is impressive.

I'm going to need to spend some time with this.

Have been thinking recently about how Alzheimer's reveals most if not all of the fault lines in our society and this might be a decent response.

I'll be interested to hear other reactions.

Re: getting the association to look at it - posting here is a start.


Best,
Alan

I just saw your other message about this. The whole report looks thought-provoking and worth a lot of study. This is the part that struck me the most right off:

">> Component 3: A belief about quality of life with dementia

With good care and support, people with dementia can expect to have a good quality of life throughout the course of their illness."

I bookmarked and will be studying this closely.

Now, if we can get more people to read and understand the multiple issues of dementia/AD

quote:

Families should be treated as 'partners in care' by professionals.

Another good point. Family members can be looked at as 'amateurs' by medical professionals when they are actually in the trenches 24/7...

It sounds good, but is any of it real. When I read component 3 "with good care etc people with dementia can expect to have a good quality of life throughout.." My mom is stage 5 spent most of her time being angry at her losses car, husband, home, parents and sad about the same losses in stage 6. she lost her freedom, her hobbies, any interest in activities, and even the ability to walk to the bathroom without help. i think her experiences were fairly typical. I dont believe that any of these changes were avoidable, but I would not consider the quality of her life to have been good in her last 3 years.

Thanks for sharing, JAB - always helpful to see additional resources.

My "review:" I was hoping for new thinking and ideas, given the title.

Having read it, I thought this report was not as insightful and valuable as I had hoped.

Lots of restating the obvious ("We believe everyone needs access to good care"), overly general statements and a restatement of what is already well-documented by the Alz org and other similar groups.

For me the biggest issue is that it tends to talk about dementia monolithically - as if it's one consistent experience throughout the course of the disease, when of course we (and they) know it isn't.

Two quick examples:

They talk about the desirability of informing people of the dementia diagnosis. Yet the amount of remaining cognitive capacity and the presence of psychiatric issues are usually vastly different surrounding a diagnosis of MCI or EOAD, vs a diagnosis of Stage 5 dementia in someone in their late 70s.

Their comments about "maintaining quality of life throughout the course of the disease" mainly apply to the earlier stages.

For example, I've spent time with dozens of people dementia over the last couple of years and I haven't heard anyone in Stage 6 say "Life is good." Often they don't talk or have much emotional affect at all, in fact. So assertions about quality of life "throughout the course of the disease" seem optimistic but unfounded on actual data.

quote:

Originally posted by Grassflower:

Their comments about "maintaining quality of life throughout the course of the disease" mainly apply to the earlier stages.

For example, I've spent time with dozens of people dementia over the last couple of years and I haven't heard anyone in Stage 6 say "Life is good." Often they don't talk or have much emotional affect at all, in fact. So assertions about quality of life "throughout the course of the disease" seem optimistic but unfounded on actual data.

I don't know; maybe it's partly a matter of luck , maybe even partly a matter of having so much money that someone can hire the best possible caregivers. I do remember reading in several books about ways to enrich the lives of people in late stages. My favorite book is "Learning to Speak Alzheimer's," about an approach the author calls "habilitation." And I read an inspiring article about a "night care" center for dementia patients, providing activities and loving attention to people in the stage where they want to be up most of the night.

After someone can't speak at all, of course they can't say "Life is good" -- but I think a smile or visible relaxation can communicate the same thing.

I don't think the report is saying what's typical; rather, what we can accomplish if we learn enough and act on what we learn.

As Cathy stated, I think it can be a matter of "luck", at least regarding the types of behavior affected or caused by the disease. I think it may also, in some cases, be a matter of having enough money to pay for the best care.

I think my mom's quality of life is the best it can be, under the circumstances. And that is a combination of luck that she does not have (at this point) any negative behavior issues. And having the funds to pay for excellent care. To be painfully honest, I know my mom is getting better care in the small, private pay home she is in than if I were caring for her in my home. I would be torn between caring for mom and meeting my husband's needs (he has severe health issues). Her caregiver is trained in dementia care. She doesn't have the complicated mother-daughter relationship constraints to deal with. She can cajole my mom into taking a shower by singing with her. She has far more patience than I do, and believe me, I have much more patience now than I ever had before mom's AD. Mom is always well-groomed, nails done, foot care done, is patiently fed her meals, enjoys interaction with her caregiver, and me, even though it is limited by the AD.

On the other hand, there are so many on this board who are, in my opinion, top-notch hands-on caregivers for their loved ones with AD.
God bless you.

quote:

For me the biggest issue is that it tends to talk about dementia monolithically - as if it's one consistent experience throughout the course of the disease, when of course we (and they) know it isn't.

Two quick examples:

They talk about the desirability of informing people of the dementia diagnosis. Yet the amount of remaining cognitive capacity and the presence of psychiatric issues are usually vastly different surrounding a diagnosis of MCI or EOAD, vs a diagnosis of Stage 5 dementia in someone in their late 70s.

Their comments about "maintaining quality of life throughout the course of the disease" mainly apply to the earlier stages.

No, dementia isn't the same for everyone. And yet, what I see on these boards all too frequently is the assumption that it is always horrible all of the time for everyone -- unless the ADLO is at such an early stage, it isn't really AD yet. In point of fact, less than a third of AD patients ever develop the psychoses that we all fear, and there are sometimes ways to help prevent those psychoses from ever developing -- far fewer AD patients develop psychoses nowadays than ten or fifteen years ago.

As Cathy says, the report isn't saying what's typical; rather, what we can accomplish if we learn enough and act on what we learn. It is a very clear articulation of the way things are, and the way they could and should be, and what needs to be done to get there. The report describes a process for making the myriad of decisions each of us has to make about caring for our loved ones -- and it describes the support we need to make the right decisions, tailored to our own, individual situations.

And, frankly, I hope that at least some of us will use this report to take a much closer look at ourselves and our views of dementia, and how we, as well as society, can and should treat our ADLOs.

I particularly like the report's comments on combating stigma and promoting inclusion. I think caregivers as a whole actually foster stigma, are embarrassed by their loved ones' behaviors and/or appearance, feel they have to apologize for them, shy away from taking them out in public if they don't appear "normal". I would like to see that change, just the way the physically challenged have courageously sought a much more equal place in society than they used to have even a few years ago.


My husband received a diagnosis of moderate dementia (stage 5) when he was 74. He was given the diagnosis at the time, and he should have been. It is, after all, his life and his future, and he has a right to be actively involved in making decisions about his future, to the best of his ability -- then and now, and in the future as well.

He is now 78 and now exhibits traces of stage 6. He would still tell you life is good. In fact, as far as he is concerned, it is much better now than when he was first diagnosed. What is making the difference -- as Cathy said -- is that I've learned a lot -- I understand much better what is going on, I've changed my expectations of him and of our relationship, I work very conscientiously to avoid the stressors that exacerbate his symptoms, I've struggled to find the best care and the best treatments for him ... and ... I've changed my ideas about what a good life is.

Will my husband's life be as good as if he did not have AD? Well, of course not! But I can make it much better than it would be, if I enter his world and look at things from his viewpoint. Once again, I'll recommend "Creating Moments of Joy" by Jolene Brackey. It shows, through hundreds of examples, how to maintain quality of life throughout the course of the disease. And the report makes recommendations on what the medical community in particular, and society as a whole, can do to support my efforts, and the efforts of caregivers everywhere, to give our ADLOs a good life.


Cathy JM wrote the most incredible post on the "My Introduction" thread, and I hope that she doesn't mind if I quote it here:

"Linda, I've just started on this journey with my life partner of 42 years, but I can see that there are lots of stages. At first (a couple of years ago) when I first realized she'd forgotten big chunks of our life together, I felt as if my own identity were threatened -- as if I needed someone to share my memories for them to be fully real.

"The next phase was just misery and fear. I cried a lot from the feeling of losing her.

"Then came some feelings similar to yours now. Marge just sat around reading all day, while I was working my butt off, doing all the housework, etc. Whoa! Unfair!

"Then after she started to hallucinate and sometimes not recognize me, came a sort of murder/suicide fantasy phase -- "I can't stand this, it's a nightmare." Lots of anger, fear, gotta get out but I can't etc.

"Right now I'm in a stage of realizing that we're closer than we were -- partly because I'm paying such close attention to her -- and that her smiles still can make my day -- and that the situation is forcing me to change in some ways that are good for both of us. It's still a nightmare at times, but mostly I can see that there are some very good things about a situation I'd expected to be totally bad. I'm learning a lot about love -- in practice -- that I need and want to learn.

"I can't predict the stages you'll go through with your husband -- but I think there will be different stages. I hope you'll find some positive aspects to the situation as you move forward. Giving Bob the best possible quality of life from day to day, and moment to moment, can lead to some rich living for you too.

"I've had to keep reminding myself that I'm not giving up my life; this IS life! And it's still possible to do other things that are important to me. Of course it all falls apart from time to time and I panic again -- but then we put it back together. This forum is great and I'm glad you're here."