Thank you Sabastien

I would like to forward this question to an expert that I think has an extensive knowledge on this field. I'm interested in this topic and shall get back here.

Your intervention could be mesured with Dementia Care Mapping, this is an observational tool, non intrusive and measuring behaviour and mood-engagement. It needs some training, but results are really meaningful. There is some research with streamlined models of use, e.g. every 10 minutes to shorten the time.

First you must measure the visual, acustic and speech capacity by older people, and than you can measure with memory scales, some dementia scales. MMSE is not a valid examination.

I'm also very interested in the answer to this question. My thoughts are that well-being is a process that is hard to capture in time. DCM may do this better than other measures. I have forwarded the question to a Dementia Care expert colleague/friend of mine.

Dementia is not an illness, dementias are very different syndromas, with different etiology, pathology and clinical symptomatology. The examination must be polivalent, because different etiology of syndromas. We have very oft the depressive pseudodementia syndromas and the psychotic contamination of cognitive functions.

I suggest you use the Dementia Quality of Life Instrument (DEMQOL-Proxy) (Smith et al., 2005). It is a scale that measures quality of life among persons with dementia and can be answered by carers. It is well tested and should fit you well. DCM can be much more difficult to use as it requires a lot of the observer but probably gives you more data.

For many from you collegues, the "dementia" is clear illness...!? You need only the measurement.... You dont need the etiology of this syndromas and the targeted medical intervention depending of causes! You need measurement the quality of life as new trend, but not the real diagnostic, therapies and rehabilitation of these very different people, different in disorders, causes, culture, enviroment, family support, motivation, fincial capacity.... Important is the Quality of life measurement....

For this patient population I would recommend QUALID scale for measuring quality of life in persons with dementia 1

1. Weiner M.F., Martin-Cook K., Vetlik D.A. et al. The quality of life in late-stage dementia (QUALID) scale. Journal of American Medical Directors Association 2000;1:114-116.

Just to add some thoughts to the discussion: well-being is not directly related to a disease and therefore is not related to any form of dementia or what we call a dementia disease. Here the question is about well-being as the subjective part of QoL. As it is subjective we should ask the person, how she feels right now and we have a lot of research (see von Kutzleben et al (2012): Community-dwelling persons with dementia: what do they need? What do they demand? What do they do? A systematic review on the subjective experiences of persons with dementia). The discussion here was about instruments, so interviews are not the appropriate method. Instruments to measure the subjective well-being as proxies have a lot of methodological gaps because proxies measure QoL lower than persons themselves and they need to learn the signs of well-being before measurement. If not, what do they rate then? If they need to learn to observe well-being before using a proxy instrument we have also a huge effort. In this research, Mr. Carmic pointed out, the well-being should be measured during a concrete intervention. So he wants to know: what happens right here (my assumption :-) )? Proxies instruments usualy rate a merged impression (14 last days). To answer the question: what happens right here with well-being during this intervention? the focus should be on affect and engagement, I think. Observation seems to be methodologically a good solution.

I agree with Nikola LLankovic on many points. Dementia takes so many forms and we are still far from discovering a truly quantifiable and predictable measurement tool to use in all or even most clinical situations. The diversity of the "dementia" population seems to confound the use of any one approach to therapy or a way to accurately measure the success or failure of the intervention. Any measurement tool we choose should ideally be easily administered by those who are able to observe starting and end points consistently over a set period of time. Again, it seems that most quality of life measurements are not universally applicable to what seems to be a most diverse population.

In the case Mr Carmic describes I would suggest to use either a dementia-specific self report quality of life instrument (QOL-AD, DQOL) or an observation instrument for QoL such as (subscales of) QUALIDEM (Ettema et al). Another possibility would be to measure if people show less behaviour and mood problems. I agree that most instruments ask an assessment of the last two weeks. But the the question is different. In your case you could deliberately as an assessment of the last hour.

Sorry, I intended to say: But then the question is different. In your case you could deliberately ask an assessment of behaviour or mood of the last hour.

It is possible that I misunderstood the question, and therefore recommended a QoL-instrument. If instead it is so that it's behaviour that will be assessed, I recommend the Neuropsychiatric Inventory (http://www.dementia-assessment.com.au/behavioural/NPI.pdf).

It is possible that I misunderstood the initial question, and therefore recommended a QoL-instrument. However, if instead is the behaviour that will be assessed, I recommend the Neuropsychiatric Inventory (http://www.dementia-assessment.com.au/behavioural/NPI.pdf).

NPI is a possibility in case of psychiatric symptoms. In this case however I would advise to use an instrument which measures more subtle changes in positive and negative affect/behaviour, such as smiling, social contact, talking, less agitation etc. Several subscales of the Qualidem could be used for this purpose.

Thank you all for your responses. All of the QoL instruments take much too much time (and cannot be re-administered within a hour) and also measure something broader than wellbeing, which is what we want to try to increase. We also do not want a proxy measure but one that the person with a dementia can complete. I have used the DEMQoL-proxy and the DEMQoL-4, which the person with dementia completes but again, I would not expect any intervention to have an impact on these measures within a hour (in addition, I have not found the DEMQoL to be that sensitive to change, but that is another matter. I think we will go with a visual analogue scale (VAS) similar to the one used in the EQ-5D. We will need to modify it and will likely use three VAS scales: happy-sad; interested-bored; well-unwell which hopefully can tap into the construct of wellbeing immediately after the activity.

If the intervention is directed towards one goal (i.e. increased enjoyment of activities), maybe it is best to define what the desired outcome is and find a well-being assessment that measures those effects. I have not found a computer-based QOL assessment that is suitable for dementia, so you may need to create your own program for this.

Firstly, not to be left by family and staff.

Secondly, a dog, possibly for more than one person.

Thirdly, occupations like music and, last but not least treat a possible depression which is very frequent among dements, if not the cause of a pseudo-dementia. Never use neuroleptics to avoid troubles.

Hello Paul, thank you for starting what has become a very interesting thread of comments! I think that Carrie Peterson raises an interesting point, which is that there may be some more proximal, time-sensitive outcome such as engagement and interest that you might be interested in measuring. Perhaps it makes sense to do this observationally using the OME (Observational Measure of Engagement-see recent work by Cohen-Mansfield and colleagues) and then collecting one of the QOL measures at less frequent intervals or at the time-point/certain dose of intervention after which you would expect to see a change? Additionally, because you mention "in the moment effects," I wonder whether you might also consider a more sequential type of analysis- if you think the effects are truly very time-sensitive. The OME and/or specific behavior items within DCM that you would expect to change might be well-suited to a sequential design considering that it is for pilot work. Best of luck on the project.

Paul Camic put a very intriguing answer; I wonder that modifying the use of the 5th subsets of MOSES (Multidimensional Observation Scale for Elderly Subjects) [Journal of Gerontology 1987, Vol 42, N° 4, pagg. 395-405] will be the answer.

Indirectly, I can just offer a suggestion to what may be the wellbeing of the person with dementia. We follow the "Prosthetic Model of Care " inspired to GentleCare by Moyra Jones [see the editorial on JAMA, January 26, 2011, Vol 305, N°4, 402-3].

The prosthetic model for dementia identifies deficits in function in the patient and builds a “prosthesis of care” for each individual that is intended to compensate for the lost function(s). The main goal of the prosthesis is not to merely regain cognition and function, but to deal with the well-being of the person, to achieve the best functional status in absence of distress and pain. For this purpose a complex prosthesis is needed, made up of 3 basic elements: the individuals with whom the person with dementia interacts, the physical space in which the person lives, and the programs and activities in which the person engages.

Staff, relatives, and anyone else in contact with an individual with dementia must understand the nature of the deficits caused by dementia.

In respect of the physical space, safety, comfort and access are the most important features. An environment with a rich infrastructure promotes interaction and reinforce the rehabilitation approach.

Programs must be individually tailored and modulated on the bases of a multidimensional evaluation aimed to balance patient's deficits and strengths.

Finally in GentleCare model BPSD are considered as the expression of an imbalance between the abilities of the individual with dementia and environmental demands, and not just the expression of the pathology. The approach to BPSD is, in this respect, mainly interpretative.

My best wishes to your effort,

Mauro Colombo

You could use the vas scales COOP-WONCA charts for wellbeing. They can be used directly with persons with dementia.

It may be helpful to use the Dementia Care Mapping tools, but the administrator will need to be Dementia Care Mapper trained. The model is based on work done by Tom Kitwood and Dawn Brooker (Bradford Dementia Centre, UK) The mapper will observe signs of wellbeing or illbeing, according to a highly structured tool. It is intended to be done for a few hours at each occasion and can be re-scored at a later date and the data compared.

This is the link for Bradford:

http://www.brad.ac.uk/health/career-areas/dementia-care/short-courses/dementia-care-mapping/

The BASQID may not be useful for your current research, but may be of interest as a QoL measure in general, and could be used at the beginning and end of your whole intervention phase. It is completed with the participant themselves. See www.rice.org.uk/basqid for more info and pdf's of the scale. It has been found to be sensitive to change over three months; as you mentioned in an earlier post QoL scales are not generally something which should show change over the course of an hour. I would think a more general well-being VAS with 'interested-bored' etc, as you suggest, would probably be quite sensitive over a short period of time and allow you to measure any changes.

Out of interest, how would you decide on the constructs you would be measuring? Do you have any preliminary data on the effect of your intervention on mood? There could be lots of options e.g. 'confident - not confident', 'optimistic - not optimistic' (off the top of my head!), while 'happy - sad' may be too broad.

Dear Paul & dear all,

serendipity does exist ! I was reading the paper by MM Lee, CJ Camp & ML Malone published on Clinical Intervention in Aging 2007; 2(3): 477-483, about Montessori-based activities x nursing home residents persons with dementia. That occurred as we are waiting prof. Cameron Camp at Golgi Institute as lecturer x our annual Alzheimer's Day meeting, on september 21st. The paper reports an intriguing experience matching young school children with NH pwd troubled with behavioural and psychic symptoms of dementia. The diads were studied by the Myers Research Institute Engagement Scale, showing immediate abatement of BPSD, substitued by positive behaviours. The tool might perfectly fit Paul's needs, as the observations lasted 5', according to 5 clearly defined different types of engagement.

The paper on CIA is free for download --> further references by Judge et al (2000) and by Orsulic-Jeras et al (2000) - both include Camp as co-Author - could be valuable. Best regards, Mauro Colombo

In response to Paul Camic, I suggest that Prof. Ladson Hinton would be a good resource for his query on dementia care

Arthur Kleinman

Hi Paul, as a nurse who currently works with people effected by dementia I believe there are two tools that could be used (these have been suggested by others). The first is 'dementia care mapping' which is a validated tool that specialist trained nurses use in my practice to monitor the wellbeing of people with dementia over a period of time. This could be used pre, intra and post intervention. While this tool is validated by the University of Bradford (and appears in the work of Kitwood and Brooker) it can be complex and training takes about 1-2 days and costs approximately £100-£500 depending on where you go. A less rigorous, but arguably more efficient tool is a wellbeing scale (which I currently use in practice). There are a list of around 14 statements and you score each one of them a score between 0-2. (0=no engagement/despondent, 1=some engagement/despondent and 2=engaging and well). This assessment takes about 1 minute to carry out. I think this tool is also based on Bradford University. If you wish to know more let me know feel free to get in touch.

I have reread all the comments in this thread and again wanted to thank all of you for some excellent suggestions. What I have decided to do for the present study is to use 5 VAS subscales. Two are related to wellbeing (happy-sad and well-unwell) and three are specific to reported difficulties for some people with dementia, which we hypothesise the intervention will positively impact (confident-not confident and optimistic-not optimistic); I thank Natasha Clarke at the Research Institute for the Care of Older People for these. Also special thanks to Mauro Colombo for some very good suggestions and leads, including the CIA paper that did not turn up in out literature search.

Dear Paul M. Camic,

Here in Brazil our research group is trying to measure wellbeing (or a hypothesis) examining factors with more strong relationship with this matter - aiming to build a non-intrusive way to measure.

To day, we still using the quality of life on dementia instrument (now I can't remember the exactly tool name) - As we know QoL is not the same concept of wellbeing; but I can let you know more about the combination of dementiaQoL tool combined with some others information (by proxy, for example).

Well Paul, give me some days and I can tell you more (and explain better) about our "wellbeing targets".

Best, Eduardo

Having personally met prof. Cameron Camp, I can now trust deeply in him

best greeetings to everybody, Mauro