posted
I haven't bought access to the study yet, but Psychiatric News just published an article about a recent study on people with mild-to-moderate dementia and their caregivers.
The results look both fascinating and disturbing for a couple of reasons.
1. Caregivers consistently evaluated the "quality of life" of family members with dementia at a lower level than the individuals themselves did.
2. According to the article, overly burdened caregivers were "transferring" their own low "quality of life" onto the family member they were caring for.
3. Scary in that people seemed to project that low "quality of life" onto loved ones with no recognition that the real pain they were tapping into was their own.
quote:For Alzheimer's Patients, Life May Be Better Than Caretakers Think Joan Arehart-Treichel Could the reason for the differing perceptions be that the caretakers feel so burdened?
It may come as a surprise, but it looks as though Alzheimer's patients who are mild-to-moderately severely ill can assess the quality of their lives better than their caretakers can.
Past studies have determined that Alzheimer's patients with mild-to-moderate dementia can accurately report their quality of life in many domains. And now a new study has found that caretakers of dementia patients generally rate the patients' quality of life lower than the patients themselves do, and the reason, it appears, is not that the patients lack the mental capacity to assess their own quality of life, but rather that the caretakers feel overburdened.
In this new study, reported in the June American Journal of Geriatric Psychiatry, Kristine Yaffe, M.D., a psychiatrist at the University of California, San Francisco, and coworkers had 91 patients with mild-to-moderately severe dementia rate themselves on their quality of life with the Dementia Quality of Life Questionnaire. That is, the patients had to report how often they felt happy, hopeful, and useful; how often they felt lonely, depressed, nervous, anxious, frustrated, embarrassed, and lonely; how often they found something that made them laugh or laugh with others; and how often they obtained pleasure from watching animals, listening to music, and so on.
Each patient's primary caretaker rated him or her in the same way, using the same instrument. Patients were also administered the Mini-Mental State Exam and the Geriatric Depression Scale, and caregivers also completed a Caregiver Burden Questionnaire and questions about how often patients were hostile or aggressive, sought attention, or engaged in sexually inappropriate behaviors.
The researchers then compared how the patients had rated themselves on quality of life with how their caretakers had done so and found that there was little agreement. The caretakers generally rated the patients' quality of life lower than the patients themselves had done.
To find out why, the investigators used results from the Mini-Mental State Exam, Geriatric Depression Scale, Caregiver Burden Questionnaire, and other questions caretakers had answered.
The reason, it turned out, is not that the patients lacked the mental capacity to assess their own quality of life, but rather that the caretakers felt burdened. In other words, it looks as though the caregivers had transferred their feelings about their own poor quality of life to the patients.
"When assessing subjective quality of life in patients with mild-to-moderate dementia, patients should be directly assessed because burdened caregivers are likely to underrate the quality of life of their relative with dementia," Yaffe and her colleagues concluded.
The study was financed by the Alzheimer's Association.
posted
This doesn't surprise me at all, having experienced caretaking in my family. My great-grandmother lived with my grandmother until her death, the last two years of which she was bedridden. My grandmother lived with my mom and Dad, and now my mother lives with me, but I don't have to take care of Toni. If anything, she still tries to take care of me!
But, I know how stressful caretaking can be. I once met with a stranger (it was what my pastor calls a "God appointment", I was in the right place at the right time when someone really needed somebody to listen) who was trying to care for her mother with Alzheimer's. She broke down telling me how her mother's personality was so different, she was mean, and cruel and constantly criticizing her daughter. The daughter was devastated because she found herself not wanting to help her mother anymore, and fighting the guilt for thinking that way.
It wasn't so much that she was being called names by someone she loved so much, but that she was upset at her (very appropriate and human) reaction to the name calling.
It's such a strain, even if the person is kind and loving to you. What can we do to make it easier on people in that situation?
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quote:The results look both fascinating and disturbing for a couple of reasons.
1. Caregivers consistently evaluated the "quality of life" of family members with dementia at a lower level than the individuals themselves did.
2. According to the article, overly burdened caregivers were "transferring" their own low "quality of life" onto the family member they were caring for.
3. Scary in that people seemed to project that low "quality of life" onto loved ones with no recognition that the real pain they were tapping into was their own.
Having seen the same behavior with with regard to my own grandparents, I agree with Belle that it is unsurprising, though unsettling.
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posted
There's two different parts to this (at least).
The scariest part is that the caregivers believed the person with dementia had a "low quality of life," when it wasn't true - they didn't appear to be in touch with their own misery but were "projecting" it onto someone else (as someone who tracks "mercy killing" cases, getting some empirical support for this particular set of dynamics is important.).
I think there are a variety of things that could be done to reduce the burden on family caregivers. One thing would be to give money for providing some assistance in the home. This has begun in some states - but for the most part, the choices for getting some assistance are limited unless you are willing to place your family member in a nursing home. Some counselling would help too - I think there's some things that help in adjusting to what's happening with a loved one who has alzheimer's. There might even be some studies out there, but I'll have to check.
posted
I read an article last month written by a doctor who had mild/moderate alzheimer's, and his explanations of how his thinking had changed, and how it wasn't all that bad, was absolutely fascinating. I wish I could remember more about the article.
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Do you happen to remember where the article appeared? I might be able to track it down on my own, but it would be great to find it the easy way. Posts: 4344 | Registered: Mar 2003
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posted
I was afraid you'd ask me about it. I think it was a medical article, in a newspaper-style montly or biweekly publication like AMA News or something. But it could have been some other free magazine designed specifically for doctors. I get a LOT of free reading material for physicians in the mail. Lemme think about it.
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posted
It could be that the patients don't really realize how much they have lost either.
My Grandma was driving around with one arm, on a morphine drip, for several years. When my mom went to see her in FL, she realized how weak my grandma was, and how dangerous it was for her to be driving, and had my grandmas license revoked.
My grandma had no idea why my mom had done that, and was really angry about it...but my mom had her best interests at heart.
My grandma and grandpa refused to move to an assisted living place because they wanted to " keep their independence", but when John fell and my mom couldn't lift him out of the shower, she had to call the police/ambulance. When she spoke to them, they knew right where my grandparents lived....because they were over there an average of 2 times a week. That was their so-called independance......they had to call the police and/or the paramedics 2 times a week to help John or my grandma up from falls...but they never realized how dependent they were to others.
People often don't realize their true situations, even without Alzheimers....the reality is too painful, or they are too proud.
I don't really understand your point. Whose opinion really matters? We all function by putting on selectively rose-colored glasses, ignoring certain parts of the world and focussing on others. Why should people with dementia be any different and why should it be any less valid a strategy to happiness than any other?
This is separate from the real issues that caregivers face - especially living in a society that offers little in the way of support for the tasks and challenges they face.
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posted
I know, first hand, about what care-givers go through, thank you very much.
My point is that dementia patients, much like children, often don't grasp all of what happens to them. They may not remember some of the day to day troubles they have, and that would show up in the survey.
The care-givers see what is going on day to day, and they have the mental faculties to know how often the patients crap their pants, or need to be washed. They know if the patient remembered their own family the week before, and they remember how often they need to be consoled for the loss of their loved ones that died years before, even though to the patient it seems to have just happened...or notice that they forgot that their spouse died at all.
I have seen all of this, and plenty more I am not willing to discuss. Not now, not ever.
Ask a lobotomy patient if he is happy, or what his quality of life is, and it would have the same quality as this study.
If a man regress to the point that he is mentally a 4 year old, of course he would say his quality of life is good....in his mind he is 4!
I know that this study wasn't for the worse type patients, but that is where they are heading. It is possible that they simply don't remember what they use to be capable of, and so they don't have the experience to judge what their quality of life is....where the care-givers see them day in and day out and can even remember it as well.
posted
But Kwea, most 4 year olds are very happy, on average (although with the average 4-year-old's mood changes, "average" might be hard to calculate).
Granted, a person with dementia is not the same as a person without. But if they are happy and content, then their quality of life is high. So they may need assistance? So what?
To go back to your example of "independent living by depending on paramedics," assuming that all the bills can be paid, why is this a problem?
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posted
Because they were so far gone that they didn't even realize that they were NOT independant, and were a danger to others as well.
My original point was that they aren't using the same standards as the care-givers were, because they were no longer able to remeber enough to compare honestly.
They have a major problem that makes them misreable, and the next day they have forgotten it happened. I saw it all the time.
Most of the time they weren't happy....but then they would forget what they were unhappy with, and it was all good.
Quality of life isn't just about how you feel about your situation...it is about where you are compared to where you were, sort of.
If they don't remember, which is what happens, how can they compare?
The care-givewrs remember day to day, and are sometimes better able to judge how a patient with dementia is doing long term.
posted
When I worked as a CNA, I would routinely tell family that alzheimer's is painless and that the patient is often much happier than the family because they are reliving their 'childhood'(after a fashion. I don't, and didn't, mean it literally.). This is what I was taught and what I observed. So, I don't know if I just happened to be on the cutting edge or what, but Stephen's study is not news to me.
As to
quote: I think there are a variety of things that could be done to reduce the burden on family caregivers.
One option that everyone should invest in, and I mean everyone, is long term care insurance. You almost certainly WILL be living in a LTC facility at some point in your life. LTC insurance is cheap as dirt if you get it young.
Many people who are taking care of their parent(s) are stressed out at both ends, since often they are still taking care of their children. So, they are stressed because of lack of time.
Sometimes, though, they are stressed because they don't understand how to treat people who suffer from dementia/alzheimer's. That is, they argue with them, rather than redirect or just play along, to try and 'prove' to them what day it is or that they really aren't their mother or father, etc. They don't know how to retrain their loved ones on so that they can be continent. Often it's just that they can't accept where their parents are at and, as stephen observed, project their own feelings on their parents. These things can be resolved through education and patience.
Finally, alzheimer's is something that the WHOLE famdamily should be involved in, not just one person. The worst thing in the world that I have observed and heard of is how the parent with dementia is dumped off on one child--the 'good one'--while the other children don't do as much as they could to help share the burden. This sucks. If the whole family takes a proactive approach to the disease and makes it a family effort, things are much easier on everyone.
posted
I agree with you there, and a lot of times the patient is fairly happy. But that doesn't mean that their quality of life hasn't declined. It just means that others have to pick up the slack, reducing the stress of planning on the patient.
If I have trouble remembering my own family, nad who I am, then I think it has suffered....even if i lack the mental capabilities to realize that at the time.
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posted
Perception being reality - if you don't know you're unhappy, are you actually unhappy? I think being happy is like someone declaring they are in love - you just need to take their word for it. There's no way to prove otherwise.
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posted
Also, a person is given capacities as gifts. When we are babies we are all severely disabled by adult standards. Our parents give us the gift of their constant care, love, and money which enables to grow up and become more or less free, independent, happy, useful to ourselves and to society. Without that we would die.
Accidents, illness, and the vicissitudes of life can take these gifts back at any time. They aren't who we are. My intelligence, for instance, was a gift, not an accomplishment or an intrinsic part of my being. A stroke could take it from me at any time.
I reject that the measure of a person should be their abilities relative to some peak ability level that they once had. Everyone has a different mix of abilities, and they are constantly changing throughout life with the additions of growth, experience, learning, and wisdom, and with the deductions of age, illness, accident.
Quality of life doesn't mean how much you are able to do, it's about who and how you are able to BE.
[ August 05, 2004, 10:44 AM: Message edited by: ak ]
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posted
Even an adult healthy human in the fullness of their powers of mind and spirit is a severely limited being.
If much more powerful intelligent capable beings were to be present, either an alien species or perhaps if we were able to breed super humans, would this detract from the intrinsic worth of the "normal" people? Is there any absolute scale, or is it just relative to whatever one happens to value or find joy in?
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posted
I don't really understand what we're talking about here. Are people who suffer from dementia happy? I'd have to go with Kat on that one. Do dementia sufferers have a lower quality of life? Probably, but that doesn't mean they're unhappy. Are we discussing ways to improve their quality of life? The trials of caregivers? Or are we all remembering our own experiences with loved ones suffering from dementia?
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quote:To go back to your example of "independent living by depending on paramedics," assuming that all the bills can be paid, why is this a problem?
It's a problem because paramedics are not there to help people in and out of showers and help them up when they fall. They are for emergency care, and every time they visit that house twice a week to help someone up they are not able to respond to a heart attack victim or a car wreck.
don't get me wrong, if someone falls and is seriously injured that is a true medical emergency, but if you're calling the paramedics just to help you out around the house, and you don't need to go to the hospital you are abusing their purpose.
this is extremely common, btw, and is a source of major frustration for emergency services. They should only be called if there is an emergency that needs urgent care or transport to the hospital, just helping someone from the couch to their beds should not fall under the duties of paramedics.
As for cost - do you have any clue what it takes to keep a fully stocked and staffed rescue unit on duty for one day? Medicare isn't going to pay for it because it's not a true emergency. The patient gets billed, but if they can't pay (normally the case with elderly patients that are on fixed incomes) they have to write it off.
One estimate was that a full third of the calls Birmingham Fire and Rescue go on are not emergencies. If a true emergency happens when they're engaged on a non-emergency call, they have to send a unit from the adjoining territory to cover it - which means it takes longer for that unit to respond where they'll really needed. That causes a ripple effect - because now that territory isn't covered. There have been occasions where every single rescue unit in the city was out on call. God help you if you have a heart attack in that moment. And remember, 1/3 of those units are on non-emergencies.
Easy to say "so long the bills are paid what difference does it make" when you don't understand the consequences. As for the bills being paid - it just doesn't happen. More than 3/4 of the people my husband treats don't have insurance. At $250 dollars minimum for a call - who is paying the bills, if medicare won't cover? No one. Or rather, everyone - the city has to pay, so that means taxes go up.
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quote:If I have trouble remembering my own family, nad who I am, then I think it has suffered....even if i lack the mental capabilities to realize that at the time.
Kwea (and others)...
just a reminder and a reality check here. From the article:
quote:The reason, it turned out, is not that the patients lacked the mental capacity to assess their own quality of life, but rather that the caretakers felt burdened. In other words, it looks as though the caregivers had transferred their feelings about their own poor quality of life to the patients.
I sense a circularity in some of the logic I'm hearing - or maybe I'm just oversensitive. The person with dementia's self-report can only be trusted if they say they're unhappy. If they're happy, it's because they're too far gone to know any better. (It's similar to the logic espoused by the surgeon in the movie "Phenomenon")
Hmmm. When I think about what I would be like if I had dementia, I think that I would much rather die first. But that's entirely different from the way I might actually feel and how I would actually interpret the value of my life if I actually HAD dementia.
I can't find the article about the doctor who wrote about what it was like to have dementia. I am thinking it was in AMA News or Internal Medicine News, several months ago. I'll look a bit more online.
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I checked AMnews issues to the beginning of July. Didn't see anything. I also did a check on a couple of alzheimer's sites - no luck there, either.
I can't tell you how many times I have dealt with exactly the same thing - a vivid memory of an article without a vivid recollection of just where in heck it came from.
Hate it when that happens!
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posted
I quite frankly don't know a darn thing about either living with or caring for someone with Alzeheimer's (or how to spell it either), but I'd like to raise another possibility. It's possible (I'd argue even extremely likely) that the caregivers' perceptions of the sufferers quility of life are affected by their own sense of burden and unpleasantness, it's also possible that the disparity comes about because the patients are displaying more of the anger, poor temper, and hostility that was referenced above and that the caregivers are keying their quality of life assessments off of that. If someone you knew was suffering from an illness and started being more unpleasant and abusive towards you, I think that it's very likely that you would think that their quality of life was diminished. If many Alzheimer's patients demonstrated more unpleasant behavior, this could, at least in part, explain both the low mood and fustration of the caregivers and their low assessment of quality of life of the patient.
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posted
I understand what the article said, Steve (and others). My point wasn't that they were unhappy, or that the article was completely wrong. I also wasn't saying that a persons quality of life is completely based on what they can or can't do physically.
What I was saying is that a lot of dementia patients do lack the ability to remember day to day experiences, and that affects their own assessment of their quality of life.
They forget that their spouse is dead and spend hours crying because they can't find them. They forget where they live and get lost. They forget to dress before they leave the house. They forget who the care-givers are even when the care-givers are their own children.
Then the next day all is well. They are as sharp as a razor, and you would never know anything was wrong with them....unless you had seen them the day before.
The disease doesn't follow a logical progression. It starts in fits and jumps, and the patients all deteriorate at different rates.
I'm sure that most patients feel fine at times....but at other times they cry themselves to sleep because they don't know who you are, and they want their spouse that has been dead for 30 years.
And the next day they don't remember how miserable they had been the day before.
Part of the reason care-givers rate the patients quality of life lower is that the care-givers see the day to day condition of their patients, both the good and the bad days, and are better able to judge the overall progression of the dementia than someone who is in the grips of it themselves may be able to.
Another big part is the fact that giving that care affects the care-givers as well. It is hard to see the people you love retreat more and more into the past, leaving you to care for them as best you can. It is heartbreaking to see your mother, the woman who was your rock for your whole life, forget who you are and become terrified of you because she is afraid you will hurt her.
My Grandma Brill forgot who my dad was....and thought I was him. We would go see her when I was a little kid and she would cling to me calling me her "little Bobby" because she thought I was her son. She didn't remember me as her grandson even though she had lived with us. She didn't remember my dad, not as himself. She rememberd him as the mean man who would "take her Bobby from her" whenever we would leave. She would cling to me so hard that I would be unable to breathe, and the interns would have to come and pull me away while she screamed my dad's name at me.
If you talked to her she was always pretty happy. She didn't remember a lot of bad things that had happened to her, and the nuns at The Sisters of Charity took great care of her. Her own daughter was one of the nuns there, and my Grandma loved her...as the nun who care to see her. She remembered (some times) that Sister Sheila would be there to see her 3 times every week, and liked her for that.
Not once did she realize that Sister Sheila was her own daughter.
So please don't try to tell me that her "Quality of Life" was good because she was happy most of the time.
They aren't equivalent, not at that stage.
There is some transference between care-givers and patients, undoubtedly. But that isn't the only reason their views can be different regarding quality of life judgments.
Following excerpt is from the "discussion" section of the research article:
quote:For several reasons, it is unlikely that the discrepancies between patients' and caregivers' ratings of the patients' quality of life were due to the patients' inability to accurately report their quality of life. First, previous research has determined that patients with mild-to-moderately severe dementia are consistent in the way they report their quality of life within and across domains, and that patients' ratings are very consistent over time.5,9,19 Second, if the patients' cognitive impairment reduced their ability to report their quality of life, we would have seen greater discrepancies between patients' and caregivers' ratings for patients with lower MMSE scores, but we did not. Previous studies have also shown that the correlation between patients' reports of their quality of life and caregivers' reports of patients' quality of life was not lower for patients with greater cognitive impairment.5,8 Third, we found that patients with more depressive symptoms rated their quality of life lower than patients with fewer depressive symptoms, suggesting that patients can validly report their own quality of life. Earlier research also found that patients' reports of their quality of life were significantly correlated with their reports of their levels of depression.5 Among depressed patients, caregivers' and patients' ratings of patients' quality of life were not significantly different for four domains of quality of life. Previous research has documented that caregivers recognize depressive symptoms in their relatives with dementia,24 and this report confirms previous research5 that patients with mild-to-moderate dementia also recognize when they are depressed.
Quality of life in dementia patients has been conceptualized and measured in numerous ways. We conceptualized quality of life as a multidimensional construct that can be uniquely defined by the lived experience of the person with dementia.9,10 Thus, the quality-of-life scale used in this study measures patients' subjective perceptions of their quality of life. As such, the questions in the scale assess the patients' mood and interactions with others and the environment.10 We could not directly validate patients' reports of their quality of life. This limitation is common to all studies of that measure subjective quality of life because assessments of feelings and values cannot be achieved without directly querying the respondent.25,26 Thus, we could only partially address the issue of validity by showing that patients' reports of their depressive symptoms were consistent with their reports of their quality of life.
My family was blessed in that none of our elderly relatives that have been cared for in the home have had dementia.
Your description is heart breaking, I can only imagine how hard that must have been. My heart is with all caregivers, it's an incredibly difficult burden to bear, and they oftentimes bear it alone.
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posted
I would think people with mild to moderate dementia are much worse off than those who are severe. There comes a point where sinking into a brain fog is almost blissful. Terrifying at first and comforting in the end. So my observations have gone anyway.
At the end of the day though, my observations aren't really worth anything. I can't tell someone that their quality of life is good or bad or that they should be happy or sad. I just have to take their word for it. I guess I just try to enjoy the time I have with them for who they are and not who I want them to be. It does neither of us any good if I pine for a memory. Seeing me as a friendly stranger and not a grandson/son/brother is enough for them and being with them simply because of who they are is enough for me. Not that it isn’t often hard, but it’s always enough.
But I'm veering further and further away from the topic and closer toward me. Kwea's experiences just go me thinking of my own.
posted
It was easier once she stopped having good days, as sad as that was. The worse part was when she would be fine one day and a ranting, raving stranger the next.
Then the third day she would be fine, and not even realize what had happened the day before.
I still think that it could have a lot to do with how advanced their symptoms were when they were asked. Mild is tough but they can still function most of the time. The so-called moderate stage is the worse IMO. Most of the time they are the person you remember, strong and loving. All of the sudden, usually without warning, they become a stranger.
My Grandma lived with us in our home with "moderate" dementia, and if anyone had asked her what her Quality of life was she most probably would have said fair, because she felt that she should have continued living in her own house...even though she almost killed herself there from neglect.....and the fact that she had gone for walks in her slip, forgetting to dress, and getting lost on the way back home even though she had lived in that neighborhood for over 50 years.
But she was fine, she insisted, and resented being forced to move in with us. She felt that WE had comprimised her "Quality of Life" when in fact it was her inability to care for herself which had done it.
I believe that a lot of these patient are happier with their situation thatn the care-givers believe. Some of that is because of transferance....the care-givers feel sorry for the patients and for themselves for having to take care of their own family members.
But that isn't the only factor....take my word for it. Or don't, it doesn't change what I think about it, having lived through at least a part of it myself. We remembered how she use to be before dementia set in, and we could see her quality of life decreasing. Particularly when she would forget her about the worse "episodes" and say we were just making it up to force her to live with us.
So we rated it according to what she had lost when she was so deep in it that she couldn't tell the difference anymore. She couldn't drive, or go for walks alone; she couldnt be trusted to babysit us or even spend time with us kids because half the time she would wander off and forget who we were or where she lived.
posted
"the patient is often much happier than the family because they are reliving their 'childhood"
My sister-in-law was a nurse in an Alzheimer's unit of a nursing home. She said the Alzheimer's patients were her favorite patients. She could see them as who they were at that moment, while the family kept trying to see them as the person they knew before the illness.
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quote:I don't really understand your point. Whose opinion really matters? We all function by putting on selectively rose-colored glasses, ignoring certain parts of the world and focussing on others. Why should people with dementia be any different and why should it be any less valid a strategy to happiness than any other?
This point actually calls into question the surprising-ness of the entire study. Though I don't have Alzheimer's, it is surely true that I have a higher estimation of my own well-being than the people close to me do. As you say, why should this be any different when degenerative diseases come into play?
Also, people do seem to be making the mistake of conflating well-being with happiness. To see why they're not the same, consider the example of a man who has a lot of "friends" who actually hate his guts but pretend to like him. Although he may consider himself very happy, he is not a very fortunate person.
posted
So, what's the point? I ain't "most people". Heck, I ain't even "some people". I'm me. And you are you; he is him; and she is her. Each of us is an individual, not a bland average on a chart.
Now you wanna say that you are gonna be happy brainburned, fine. But your happines ain't my happiness. So don't try forcing your "people should feel" onto me.
Which is what this "study" is really about: justifying treating the most miserable the same as the happiest.
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posted
Even I agree with some of the findings. I just question if that is all there is to it.
I agree that it is very hard to care fro these individuals, particularly when they are your family members, and that that probably affects their assessment of the a patients quality of life.
But I also think that a lot of those patients have no clue on how far their disease has progressed, and that affects their assessments as well.
IMO, quality of life isn't simply how happy you are with your lot in life, although that is the easiest to notice and measure. It is how you are able to live your life as well. Both are a part of it, and both need to be considered.....and some patients aren't aware of how dependent they have become on others.
As far as my grandparents situation, I had a problem with it because their quality of life was dangerous but they refused to acknowledge it. The EMT's and Police are there for real emergency's, not to pick up older people who have fallen. When they are called to do that, of course they help out, and if it is a rare situation that is fine.
But when someone is doing it 3-4 times a week they are placing an undue strain on the system. Sometimes there would be a significant delay in getting help for them because there weren't enough available units to go there right away. The EMTs knew them, and knew that it was a low priority compared to a true medical emergency. They were all busy with real emergencies so my grandparents would be waiting there for up to an hour, collapsed in the tub...or the garden, or wherever.
But when you asked them why they wouldn't hire a live-in nurse, or go to assisted living, they said they didn't need that kind of help. Even though they did, and were getting it from outside sources that were placing their health and wellbeing as risk on a weekly basis.
They could afford a better situation, no doubt about it, but refused to do it because they refused to acknowledge their current dependence, which was greater that it would have been in an assisted living complex. Or if they had moved into an in-law apartment with family, which was an option as well.
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CT, I wasn't talking about the actual qualitiy of life for the Alzheimer's patients. I was trying to give an alternative explanation to the idea that this disparity was the result of only the caregivers projections. I don't think that from what I read, we could rule out that the caregivers were making a rational assessment of the patients' quality of life.
In terms of dealing with the problem of this disparity, whether the caregivers assessments are based on rational criteria or irrational projection is a very important issue. If it's irrational, it's a lot less amenable and accessible to change. If however, they are basing their assessments on some rational criteria, then we can look at why this criteria don't match up well with the criteria that the patients are using and, if warranted, teach the caregivers more accurate ways of assessing quality of life.
Trust me, I'm on board with differences in perceived quality of life, no matter what the reason, being very important. It's just that I don't necessarily think that the suggested reason is the only likely or useful one.
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Of course, right now, I'm involved in trying to show how, in our culture, self-report measures of self-esteem are largely measures of how successful people are at self-deception. I don't trust anyone's self-report as an accurate reflection of their true situation.
Consider, for example, a manic-depressive. At one part of their cycle, they'd report an extremely high quality of life. At another, a much lower assessment. Quality of life, to be a really useful term, has to encompass more than a person's temporary subjective feelings of positive mood and expected outcomes. Your assessment of your quality of life might be great when you're racking up debt on your credit cards, but it's going to plummet when the bills come due and you can't pay them.
Posts: 10177 | Registered: Apr 2001
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Or when you are having a good day and think you don't need help, but when you fall and can't get up youself, or you get lost 3 blocks from you house...but two days later you don't remember any of that and everything is peachy again.
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The worst thing in the world that I have observed and heard of is how the parent with dementia is dumped off on one child--the 'good one'--while the other children don't do as much as they could to help share the burden. This sucks. If the whole family takes a proactive approach to the disease and makes it a family effort, things are much easier on everyone.![[Dont Know]](graemlins/dontknow.gif)
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