We were joined for last night’s #EBNJC Twitter chat by Professor Terri Kean, Associate Professor at the University of Prince Edward Island. The chat focused on quality of life in dementia care. The chat was prompted following a recent paper by Dewitte et al (2018) that compared assessments of quality of life by people with dementia, and their carers. It found diverging views – importantly, that people with dementia often reported their quality of life to be greater than was assessed by their carers. This is an important finding, because it indicates that where possible, we should take the views of people with dementia into consideration rather than presume that a proxy can make judgements about their quality of life.

 

What is quality of life? 

 

• “such a big concept” with variable domains – how do we know which ones are important for people with dementia without creating cumbersome assessment tools.
• “Quite – the WHOQOL has 24 measures across 6 domains! You could spend a lot of time measuring, and not much time “being with” the person” @heblau

 

How can we make sense of the divergence of QoL perceptions between people with dementia and proxies?

 

• “The recent commentaryidentified that proxies can under-represent QoL in the person with dementia, have you found this in practice?” @lisakidd22
• “Certainly, families/caregivers/staff are important. Their perception however, is only a reflection of what they see – not what the person with pain or dementia or loss actually is experiencing. I agree though, tools are important cues to planning care” @terri_kean
• ” It can go both ways – we can assume someone is well because they are quiet but actually they could be withdrawn; & we could imagine them to have poor QoL because they have dementia when their imagined world is actually acceptable” @heblau
• “This is true for most ‘subjective’ assessments – pain, QoL, mood. But…. these assessments can still be useful, and a slightly biased assessment is preferable to not thinking about these things as assessment is too difficult.” @DrTerryQuinn
• “I wonder if fear is an element of this – where family/caregiver are fearful of what their lives might be like with dementia…I wonder if it is a preconceived idea of what it is to live with dementia – the public perception seems to suggest it is a greater burden than those living with dementia” @terri_kean
• An interesting suggestion was made by @lisakidd22 that proxy measurements might be confounded by the potential sense of burden that informal carers and loved ones can sometimes feel so that in a sense they are rating their own QoL – a projection perhaps of what their life would be like.
• Research suggests the divergence of appraisal of quality of life is also present early in the course of dementia, when patients have very mild memory impairment… we often see those who have advanced dementia. It may be a surprise to find how those with mild dementia are living well.” @terri_kean

 

 

“Can it be measured?” 

 

• “Lots of studies have tried to measure quality of life in persons with dementia. What I find interesting is that those living with dementia often rate their QoL higher than the caregivers/family do” @terri_kean
• “It’s much better to be person led- evidence that proxy assessments often inaccurate” @bridgetJohnst
• “Certainly, families/caregivers/staff are important. Their perception however, is only a reflection of what they see – not what the person with pain or dementia or loss actually is experiencing. I agree though, tools are important cues to planning care” @terri_kean
• @WeEOLC agreed – ” Absolutely – so perhaps QoL measures have a role in reassuring loved ones about the breadth and depth of experience that constitute QoL – can help focus care on to what is important”

 

Should it be measured? 

 

• “And that is a really important time to assess QoL because it can give an indication for future planning – what is important now will still be important when you can’t say it any more” @WeEOLC
• “Completely agree. I think it’s key to start these conversations early in the dementia trajectory if possible to have a good base understanding of what QOL looks like for an individual. What I think is important may not be the same as what my parent or grandparent does…” @trifectaRN

 

How should it be measured?

 

• Involving people with dementia in the development and testing of such tools was felt to be key.
• The feasibility of using tools was also a concern: “An often forgotten aspect of feasibility and acceptability is the person performing the test. In a busy ward, care-home, research study – do you actually have time to do the assessment?” @DrTerryQuinn
• “For assessing QoL in dementia (or delirium, or TBI etc) feasibility and acceptability are really important. An assessment that gives lots of detail but that no-one can complete is worse than useless” @DrTerryQuinn
• “This is true for most ‘subjective’ assessments – pain, QoL, mood. But…. these assessments can still be useful, and a slightly biased assessment is preferable to not thinking about these things as assessment is too difficult” @DrTerryQuinn
• “A comment – my own lived with diary/calendars kept for last 6 years – recorded most of this and have struggled to share and still have available. Why have become part of Research.” @alangdem
• “That is amazing. The journey is one we never hope to have to take but incredible that you have captured this in your journal entries” @terri_kean
• @BridgetJohnst shared a link to a feasibility study in which people with dementia and their proxies were consulted to find out how easy PROMS (Patient-Reported Outcome Measurement) were to use by people with dementia

 

Several more important questions were raised and not necessarily answered in this chat. 

 

• “I’d be interested to know what ways self-assessment is undertaken by people, carers and loved ones in practice at the moment – anyone know of any?” @lisakidd22
• “I would want to know: do QoL assessments turn into real actions in the everyday lives of people with dementia?” @heblau
• “I wonder if … is it dementia that lends to poor QoL or is aging in general viewed negatively”@terri_kean

 

These might be interesting topics for future exploration…watch this space, Do feel free to post any comments and thoughts below