This was a joint project, involving the Australian Government Department of Health and Ageing, Alzheimer’s Australia, and our Aged Care Evaluation Unit at Southern Area Health Service.. We are affiliated with the Australian National University. I did the pilot work in the ACT, devised the study, and wrote half the final report but I want to give particular mention to Dr. Tanya Caldwell, who did most of the real work, from formatting the questionnaires, being the star of the video showing how to administer it, keeping track of the whole project throughout, and doing the very complex data analysis. Jerome did the medication analysis, Ailsa advised on the statistics, Michelle entered the data
Here is some background. In 1999, in what Sir Humphrey Appleby would have described as a courageous decision, the then Minister for Ageing, Kevin Andrews, allocated $1.4 million for a four year programme of support and education groups in every Australian State and Territory, not only for carers of people in the earlier stages of dementia but for the people with dementia themselves. Why courageous? First, most studies of support groups just for carers, let alone people with dementia, show good participant satisfaction, though it is often very badly measured. Such consistent findings for satisfaction are important; it shows something is happening. But 25 years of research shows very little evidence that traditional carer support groups make a difference in measures reflecting community health, for example mental or emotional status. Only a tiny number of studies show an effect, and these have generally been much more intensive and focussed programmes – including the classic study by Henry Brodaty and Meredith Gresham in the late 80’s, where effects were still apparent several years later. This has given rise to journal articles which conclude: Support groups don’t work. Secondly, the concept of groups for people with dementia is relatively new – though it has been done for several years in the states, NZ and here. But there is almost no research base from which to determine whether they have any affect. Thirdly, groups for PWD are obviously a waste of time because, as we all know, while in the waiting room of a GP, geriatrician or neurologist you are just a bit absent-minded. After you go in and receive a diagnosis of dementia all insight and all memory is immediately lost. This is clearly nonsense – the dementias are by definition progressive, and it is much more useful think in terms of a continuum. But the view I have just lampooned is an example of the kind of all or nothing categorical thinking which plagues this area. Got it or haven’t
The groups are run over 6-8 weeks, generally with one two hour session per week The people with memory loss and their carers attend some sessions separately, and some together. The groups are facilitated by trained dementia-literate staff from the Alzheimer’s Association. The programme gives basic information about dementia, describes and gives advice on how to negotiate and manage the labyrinth of available services, provides stress management techniques, communication skills, and strategies for coping with difficult behaviour. Emotional support is also a primary component of the programme. That is, the groups provide the opportunity for carers and people with memory loss to discuss their experiences with other people going through similar situations, and with staff. The content is very similar to what recent meta-analyses have suggested are active factors in those few support group studies (though involving carers alone) which have produced effects in other than participant satisfaction.
Our job was to evaluate this programme, to see if attending the groups had a measurable effect. That is, do these support groups -at least - ‘work’ There were many logistical and methodological problems, including the fact that this had been rarely attempted before, but our aim was to do as rigorous an evaluation of the programme as the realities of the situation on the ground allowed. Making the methodology fit the situation, rather than trying to cram reality into perfect methodological templates, and providing the best level of evidence we could. An interesting feature of many who do psychosocial interventions in dementia is a reluctance to expose them to rigorous research scrutiny, and I’m sure that you’ve all come across wonder-therapies in dementia that make amazing claims, uncontaminated by evidence Paradoxically, when well-thought out psychosocial programmes are exposed to research scrutiny, they often stand up very well. As this intervention did.
This slide shows the design of the project. For the main study group, measures were given before the group started, when it finished, three months after the group finished, and about 15 months post-group. One of the many methodological constraints was that logistics made randomisation into wait-list and main sample impossible, so the wait-list group was naturalistically selected. It consisted of people recruited first when a new group was scheduled, but who had to wait until enough people were enrolled before the group could actually start, a mean of about 6 weeks, a length of time roughly comparable with the length of the programme. Wait-list subjects completed an extra research measure - when first enrolled, and then just before the group started . POINT
Separate questionnaires were designed for the person with dementia and their carer. Carers completed their questionnaire alone and sealed it in an envelope, so staff could not see their answers. People with dementia were interviewed direct, using a standardised questionnaire. We made a video, showing assessors how to do it.
Because of difficulties in self-report about recent factual information, we used the carer for all factual questions about the person with dementia, such as age, health, and place of living. For the more emotion and mental-health based content, we asked the person with dementia direct. So, what about insight? It is only possible to continue to believe that people with dementia, certainly those in the early stages, have no insight into what is happening to them by never actually talking to them. That is, talking to them in an empathic conversational way as opposed to, for example, giving them a neuropsychological test or reading about them in a journal article. We also know that insight remains intact for some time from much recent work, for example, by Linda Clare in the UK. And, remember, people who attended these groups were selected because they both demonstrated insight and were able to talk about what was happening. So were weren’t worried about insight per se in asking people with dementia themselves how they felt, rather than asking carers. However, we had to take account of the fact that the memory problems of people in the mild to moderate stages of the commonest dementias are mainly to do with problems in, first, processing incoming information and, secondly, even if the information is efficiently stored in memory, retrieving it. Remembering it, in everyday terms. We therefore formalised a procedure I have used for many years clinically to ensure that the person was oriented and understood each question as it was asked, and retained it in working memory while considering it.
Here’s an example. The interviewer held up a short statement such as this, from our depression scale, and asked the person with dementia to read it aloud. Immediately after the person with dementia had said, for example, “I feel miserable and sad’, the interviewer asked “Is that true?” The statement remained in front of the person with dementia. If the participant responded with a definite and clear yes or no, their response was accepted. If their answer was equivocal, standardised follow-up questions were asked. This method capitalises on the fact that the ability to read words normally declines quite late in dementia, and that reading words and being asked to think about information associated with them assists processing. This method allowed responses to be graded from 1-4, consistent with the Likert Scale scoring of the Leeds Depression Scale.
The questionnaires for people with dementia were shorter but, overall, we assessed general mental health, depression, social activities, service use, stress to carers caused by challenging behaviours, future planning, satisfaction with the programme, cognitive status and insight. We also asked about general coping, medication use, physical health, type of dementia, and various experiences related to having or supporting someone with dementia. These ‘dementia-experience’ items were based on outcomes that members of the Alzheimer’s Association were expecting from the programme, for example, improved communication or less embarrassment about the disease. For the small proportion of people with dementia who scored 0 on our insight assessment, we didn’t administer the dementia-experience questions. A score of 0 did not necessarily mean they had no insight we had to assume that, at least in the context of doing the questionnaire, it was not OK to be bombarding them with questions about what it was like having dementia.
We had baseline data for well over a hundred carer/person with dementia dyads but, because of the intrinsic difficulties of data collection with this population, we ended up with usable baseline, end of group, and three month follow-up data for 87 carers and 84 people with dementia. Response rates range from 20 – 50% of those passing through the groups. We had 32 in our wait list control group.
In the sample, female carers were slightly more common and participants were in their late 70s, apart from women carers, who were slightly younger. The majority of carers were spouses. Most participants were living in the community and quite well educated, and of anglosaxon heritage. There was an equal representation of men and women amongst those with dementia, of which the commonest diagnosis was of Alzheimer’s disease. The majority had been diagnosed in the two years before attending the program. The mean score for insight out of four was 2.79 and, based on the Clinical Dementia Rating Scale, the clock drawing test, and the abbreviated mental test, the average participant was in the mild stages of dementia – though there were some more impaired.
First, like almost every group ever run, satisfaction ratings are high. At the end of the group, 78% people with dementia said that the program helped them all/most of the time. 87% said they enjoyed the groups all/most of the time. Responses to open-ended questions suggested several broad themes: Social and communication aspects, including making friends and being able to talk openly and freely about what was happening to them More than half the sample talked about the joy of finding they were not alone Half said they had learned important information and skills Some (12%) talked about feeling empathy and admiration for others And the same proportion specifically mentioned actually feeling much better Here are some of the quotes
Read As you’ll see, I’ve included one negative comment. There were only two.
77% of carers at the end of the programme reported that the group helped them a lot, 98% in total said it was at least somewhat helpful. 15 months later, of those from whom we had data at both end of group and long-term follow-up, 66% said the groups had helped a lot and 98% said it was at least somewhat helpful. We have a lot of qualitative data about what they found helpful. Overall, the most common themes were: Learning more about dementia, what will happen, and support services available – just that there were such services Realising they were not alone Feeling more tolerant or understanding of the person with dementia Feeling more confident and better emotionally equipped to deal with what was going to happen Many people mentioned the benefits of having access to medical expertise (most groups had a presentation from a geriatrician). While the medical information sometimes scared them, they appreciated better understanding the disease. This seemed to have been lacking from their previous contact with medical professionals. Here is a sample of quotes, all from 15 month follow-up
For carers’ perception of usefulness of the groups for the person with dementia, the figures were again quite high. There was a drop after 15 months in those saying it helped a lot but, still, a total of 80% said it had helped a lot or somewhat.
Both at 3 month follow-up and 15 month follow-up, carers recommended the programme for other people in their situation. At 15 months, 66% strongly recommended it for other carers, and 72% strongly recommended the group for people with dementia. In total, over 90% recommended the programme for other carers/people with dementia. Satisfaction immediately after a group tells you something has happened, even if there is no measurable change on other instruments. High satisfaction 15 months later, when so much more will have happened along the dementia journey, and strong recommendations for others to do the program is much more meaningful. And it is backed up by movement on our other measures.
Now results other than satisfaction. This graph shows the general mental health scores at the start of the group, the end of the programme and then 3 months later. The GHQ12 covers depression and anxiety and can really be seen as a measure of distress. About 60% of the carers had GHQ12 scores suggesting clinical problems when they started the group. The top green line shows the people with clinical levels at the start of the group and the bottom red line/s shows the group as a whole over time. General mental health levels were not significantly different at the end of the group but had improved 3 months after the group finished. We have adjusted for service use and all other controlling variables. The adjustment line can just be seen behind the main line, but it makes no difference. In our control group there was no significant change in mental health levels over a 42 day period while partipants were waiting for the programme to start. That is, in the absence of the programme, there was no change. However, for the main sample, the GHQ improvement was not apparent until we took our follow-up measures 90 days after the group finished. Given the time difference between this and the control group, we cannot definitively say that improvements would not have happened anyway, without group attendance. Nevertheless, as the result is not affected by any other variable, it is a reasonable inference that attending the group produced the improvement in GHQ scores over time.
Upon enrolling in the programme about 35% of the family/supporters had clinical level of depression symptoms, based on the Beck Depression Inventory. This is a highly distressed group of people; one family member/supporter noted: “The world rushes on, but for us each day is Ground Hog day” . Depression did not change significantly over the study period for the whole sample. For the 35% (the green line) who had clinical scores when they started the group, there was a small but statistically significant improvement by the end of the group, which survives when all other controlling variables are entered into the equation, but this had gone again by three month follow-up.
There were significant improvements in capacity to cope with difficult behaviour by the end of group, and these were maintained. This is both using behaviours carers identified as stressful at baseline – which we tracked through the study - and also mean stress from any behaviour. These improvements were not due to other service use, change in cognitive level, attending the follow-up groups, or medications. So it is highly likely that, for carers, attending the groups has a significant impact on the stress associated with behaviours they find ‘challenging’
This graph shows the proportion of carers who had made legal and financial plans for the future. At the 3 and 15 mth follow-ups there were significant increases in the likelihood of plans being made. The three month follow-up is of some interest here, given that future planning was specifically targeted by the programme. The 15 month follow-up cannot be attributed to the programme but, in any case, its not much greater than at 3 month.
Carers were asked Though caring for or supporting someone with memory loss can be stressful, the experience has also enriched you. Do you agree or disagree? This slide shows that there was a significant improvement at the end of the group, maintained up to 3 month follow-up. This improvement was not evident in the control group. The effect seems small so it has to be very consistent across the sample. So it seems likely that the groups have a positive impact on carers attitude to the “caring/supporting” process…that is it has an impact on positive emotions, not just on stress and distress….
Now, people with dementia. We have a very rich pool of qualitative data about how the people with dementia saw their situation. I hate having to ask people to repeat things for me. I am afraid of not being able to remember, of getting worse, of becoming senile. I just go blank sometimes and then panic and feel so stupid.
And another, which shows empathy for others. … Total frustration, feelings of insecurity, I don’t know whether this is the correct way of saying it…I feel it’s pulling shreds off my wife. I feel stressed being locked into this.
This illustrates depressive symptoms in the participants with dementia over time. This graph is included to illustrate an important point. We convert complex data to means in order to do statistical analysis but, at the individual case level, the mean is meaningless. See the mean line here – the apparently simple lines you see on our outcome data. But everybody’s journey is different. Now, you will remember that, though carers sealed their questionnaires in an envelope which was then posted to us, the method of questioning the person with dementia involved a face to face interview, mostly done by Alzheimer’s Association staff. We have adjusted for many variables in our analysis, for example, lateness of questionnaires, use of other services, medication changes. We have also adjusted for cheating – or in jargon – interviewer effects. Where the same interviewer did baseline and follow-up questionnaires for example, or patterns for particular interviewers. There is actually a small interviewer effect – probably due to the fact that people with dementia opened up a bit more for certain interviewers. We have adjusted for these effects in the following analysis. It’s also worth remembering that there was a long time interval between questionnaires so interviewers would have to have had long memories of what they recorded last time.
The bottom lines represent the mean depression scores of the sample with dementia as a whole, the line I pointed out on the Jackson Pollack painting I just showed you. For the whole sample there was no significant change at the end of the group. However, participants were less depressed at the 3 month follow-up. This change can statistically be accounted for by change in a combination of the following factors: level of dementia (on the CDR), insight ,and decline in activities of daily living. The fact remains that they are less depressed. For participants with dementia, about 20% had a level of depressive symptoms that were clinically significant at baseline. In this clinical sub-sample there was a significant improvement at the end of the group, and even more improvement at 3 month follow-up. These findings could not be accounted for by any controlling variable.
At 15 month follow-up we had lost about half the sample, mainly due to poor health, refusal or because people had moved out of contact, So those for whom we have 15 month follow-up data is an survivor sample, but interesting none the less.
For the surviving sample with dementia as a whole, level of depression stayed the same throughout. Of the participants with dementia who had a clinical level of depression at baseline – the green line - only half were still available to follow-up measurement at 15 months. They had maintained the improvement which had occurred at the end of the group. We obviously cannot generalise the results to those who didn’t participate at 15 month follow-up but it’s a nice result for those 10 people, especially given that the decline in depression was almost certainly a result of group attendance.
Generally speaking the carers mental health, stress from behaviours and depression levels were not significantly different from baseline 15 months after the programme finished. That is, in the absence of the programme and, with increased cognitive decline in the person they cared for, they had reverted to the levels they scored at the outset. The main results were at three months. However, they had not got worse
In summary, firstly, participants rated the programme highly in terms of its helpfulness, and continued to do so 15 months later. Secondly, at the end of the group, carers were less stressed from the behaviour of the person with dementia, and were more positive about caring/supporting for someone with dementia. At 3 month follow-up, carers had improved levels of general mental health. People with dementia were less depressed, particularly those who started the group with high levels of depression. For them, the effect was quite marked and was already apparent by the end of the group. Apart from the GHQ – about which must be a bit of equivocation, these findings could not be explained by the control group or change in other measures, for example medication change or increased service use. Or by interviewer effects for the person with dementia. On the topic of cheating, a final point worth bearing in mind is that, in the range of questions we called the dementia experience, and which were included at the express request of Alzheimer’s staff, there was no change. If there was any fiddling going on, you would certainly have expected effects to have shown up here. Instead, it is clear that Alzheimer’s staff have shown a great commitment to doing the right thing – not only in the programme, but in showing great integrity in helping us with the evaluation. That is, there is a very strong probability that the changes we found are due to attending the Living with Memory Loss Programme.
At 15 months, people with dementia who started with high depression levels were less depressed but most measures were not different from the start of the group.
In conclusion, there are three main points to make. Firstly, the Living with Memory Loss programme is time limited and relatively inexpensive. It was a courageous decision to fund such a major national programme but Sir Humphrey Appleby’s cynicism would have been misplaced. There are sufficiently strong results to suggest it should continue – at least for this group of people, those with early stage dementia. And I am pleased to say that Julie Bishop, Minister for Ageing, has recently announced continued funding for the programme The results clearly indicate that people with early stage dementia can benefit from attending support/education groups From a health-outcomes perspective, it is also of interest that most evaluations of support groups for carers in general have no significant findings other than high satisfaction levels. The results we have obtained are most likely due to well-chosen program content and delivery and the fact that it has been properly measured. It is yet another example of the fact that, when well-thought through psychosocial interventions are exposed to fairly rigorous measurement, they come up well. So don’t be afraid of research.
Finally, we should acknowledge the time and effort of the participants of the living with memory loss programme, in filling out our large questionnaires. If there are any of you in the audience, I thank you very much. We must also acknowledge the energy and integrity of Alzheimer’s Australia staff. Anna Sarre and Glenys Badger have been coordinators of the National Program during this time and have been enormously helpful. Henry Brodaty and Richard Rosewarne gave valuable advice when we were devising our questionnaire, and Helen Berry, Keith Dear and Professor Anthony Jorm have been consulted about the statistical analysis. Finally, we must acknowledge the role of the Australian Government in funding this national programme. Both the program and our evaluation have aroused great interest overseas.
For more information on the programme, Glenys Badger is the National Coordinator, at this address.
National evaluation of Alzheimer's Australia's support groups for
National evaluation of Alzheimer’s
Australia’s support groups for
people with early stage dementia
& their carers: The ‘Living with Memory
AN AUSTRALIAN GOVERNMENT iNITIATIVE
Mike Bird, Tanya Caldwell, Ailsa Korten, Jerome Maller, Michelle Powderly
Aged Care Evaluation Unit
NSW Southern Area Mental Health Service
Australian National University
25 years of research has produced little evidence
that even carer support groups are effective in any
measures other than member satisfaction.
No evidence for the effectiveness of groups
involving people with dementia
Widespread belief (including amongst many
health professionals) that insight is lost in
dementia, so groups for them must be a waste of
The LWML Programme…..
Run by Alzheimer’s Australia
Groups 6-8 weeks, two hour sessions
Carers and people with memory loss typically
meet together and then separately
Dementia education, medication/treatment
options, available services, skills development,
clinical strategies, and emotional support
Does attending the group produce improvement in
people with early dementia and their carers/supporters
As rigorous a design as the constraints of the situation
Measures to include multiple aspects of dementia,
including, wherever possible, validated health scales
with proven sensitivity for this population
< 3 weeks before group
Just before group
END OF GROUP
Just after group
3 & 15 months
Alzheimer's Australia interviewed the person
Self-report is unreliable in dementia
Carer asked all factual questions
Questions asked of the person with dementia
are also asked of the carer
The way the person with dementia was
interviewed maximised the question being
processed and understood
General mental health (GHQ-12)
Depression (BDI, Leeds)
Stress caused by challenging behaviour (Carer stress scale)
Cognitive status (Clock, CDR, abbreviated mental test)
coping, medications, physical health, medications, type of dementia, experiences
Adapted from Guidelines for the rating of awareness deficits
Response rate to 3 month follow-up
87 carers (85%)*
84 people with dementia (79%)*
*of those who completed the programme with valid start of group data
Wait list participants:
32 carers and people with dementia
Characteristics of the participants
Person with memory loss:
Median yr of birth 1926 (f); 1928 (m)
74% Alzheimer’s 12% Vascular/stroke, 14% other
57% diagnosed within last year, 24% 1-2 yrs ago
7.0 (mean) clock drawing, 7.5 (mean) AMT, 2.8 (mean) insight
Median yr of birth 1932 (f); 1926 (m)
The group (Person with dementia)
Helped me Enjoyed the groups
All/most of the time
…showed that I can go out again and mix with people
…being able to discuss my problems…sharing with no
embarrassment about it
…proud there are other people trying to change their
lifestyle because they have to
…I’m not anxious any more about what will happen.
I’m not going to allow it to interfere with me
…It helped to know that I am not alone but it has not
helped me improve my memory
…It hasn’t been any help. I have forgotten what
Satisfaction: Carer - themselves
Means 1.3 (se .06) 1.4 (se .07)
No sig difference over time (n=60, who filled in both)
End of group 15 mths post
1. Helped a lot
3. No difference
5. A lot worse
Satisfaction (all participants)
…I’ve often thought back to what other carers said and
how they solved problems.
…made friends and we are able to cry on each other’s
shoulders together as we both know what it’s like to
have a partner with problems
…I found the program helped me understand what it
was like for him trying to cope with everyday living …
helped me be more tolerant
…explained the illness more thoroughly. I feel much
less isolated and no longer guilty about doing things for
Satisfaction: Carer - person with dementia
End of group 15 mths post
Percent 1. Helped a lot
3. No difference
5. A lot worse
Satisfaction (all participants)
Means 1.8 (se .11) 1.8 (se .11)
No sig difference across time (n=58 who filled in both)
Recommend for others (carer at 15 mths)
For other carers For other people with
Start End 3 mths post
Start End 3 mths post
Beck Depression Inventory (carer)
Start End 3 months
Stress from challenging behaviours
Start End 3 mths 15 mths
Caring: an enriching experience...
Though caring for or supporting someone with memory loss can be
stressful, the experience has also enriched you. Do you agree or disagree?
I hate having to ask people to repeat things
for me. I am afraid of not being able to
remember, of getting worse, of becoming
senile. I just go blank sometimes and then
panic and feel so stupid…
Total frustration, feelings of insecurity, I don’t
know whether this is the correct way of saying
it… I feel it’s pulling shreds off my wife. I feel
stressed being locked into this
Depression (person with dementia)
days before or after group
Start End 3 mths post
adjusted for insight,
adjusted for insight,
adls, cdr, attended
Depression (person with dementia)
15 months later…….
* participants from the main sample who completed the program
& had valid questionnaires at the start of the group
102 carers* 106 People with
Participants 59 (58%) 52 (49%)
Refusal/couldn’t contact 22 (22%) 24 (23%)
Death: carer/person with dementia 3 (3%) 4 (4%)
Administrative error 7 (7%) 4 (4%)
Poor health/in care (either) 11 (11%) 22 (21%)
Start End 15 mths post
Depression (person with dementia)
Other findings at 15 mths
Carers' mental health, stress from behaviours,
depression were not significantly different
from the start of group
Summary of findings
At 3 months
CARER: improved mental health (GHQ) , decreased stress
from behaviours, increased positive emotion about
caring/supporting (feeling enriched)
PEOPLE WITH DEMENTIA: less depressed,
particularly who started with high levels of depression
Findings not be explained by change in other measures, or the
control group, highly likely they are due to attending the group
Summary (2) ….
At 15 months
People with dementia: who started with
high depression levels were less depressed
Cognitive decline evident
Some evidence of increased service use and
planning for the future, but this could be
due to the passing of time
Most measures were not different from the
start of the group
Time limited program shows high satisfaction and
improvement in mental health and other measures for
both carer and person with dementia
People with early stage dementia can benefit from
attending support/education groups,
Other support group evaluations often show no
findings other than high levels of satisfaction, so what
explains the findings of this one?
Programme content and delivery?
Alzheimer’s Australia staff, Anna Sarre &
Henry Brodaty, Richard Rosewarne
Helen Berry, Keith Dear, Anthony Jorm
For further information
The Living With Memory Loss Programme:
Glenys Badger, Alzheimer's Australia