The key aim of The Bine is to improve the wellbeing of people with dementia, their carers, and their families. But what do we mean by wellbeing, and then how do we measure it? We’ll set down our thoughts, and then invite you to join us on a critical research project.
A positive research experience …
Lena and I enjoyed our twice-weekly trips to the gym, a half-hour bus-ride away. For a start, we were getting out of the house to do something. Even in the early stages dementia had started isolating us. We were carrying a big secret – the stigma associated with dementia made it hard to chat about it with friends, so we stopped seeing them. That’s what made it so good to meet up with the little group of people who were in the same situation as us. On the enthusiastic recommendation of Lesley, one of the DAPA group, we started getting involved with all sorts of other local dementia groups too. Life changed for the better.
The exercise programme did us a lot of good too. Lena had always enjoyed the gym – when we first met in Abu Dhabi, she’d just retired from a 12-year dancing career and was working as a fitness coach. I wasn’t on the DAPA programme, but while Lena was in her one-hour sessions, I decided to start using the gym next-door. I lost a shedload of excess weight, and before I knew it I’d started running – for the first time since school. We enjoyed ourselves so much that we took out a gym membership so that we could go every day. And I grew to love running – it was my escape-valve from dementia, a way to free myself from the responsibility of care for an hour or so a day. I’m certain that my improved physical health helped my mental state too, made me a more caring carer.
… with disappointing results
Three years later, after nearly 500 people had participated in the DAPA study, the results were published in the British Medical Journal. The report concluded:
So exercise didn’t slow cognitive impairment. I had no disagreement with that. As I said at the time, I saw no evidence that Alzheimers was retreating as we stepped up our levels of physical activity. Far from it. In the four months of the DAPA programme I noticed that Lena’s dementia seemed to be advancing at a faster rate than the other participants.
But “no noticeable improvements in other clinical outcomes”? Well, it depends what you mean by clinical outcomes. This is how one of the world’s leading children’s hospitals, the Great Ormond Street Hospital defines the term:
By that yardstick, the clinical outcomes for us, and I believe for most other members of our cohort, were extremely beneficial. So had Warwick got it wrong?
The problem is the lack of precision in the original statement of objectives. The University was investigating the benefits of exercise to ‘cognitive impairment and other outcomes‘. What other outcomes? Did quality of life come into it, or not? And what about the impact on the carer, who plays such a large part in the dementia patient’s welfare? Reading the full report, it seemed clear that these were only minor concerns for the researchers. There was no mention of the participants’ emotional state: quality of life was measured by mobility, self-care, and the ability to carry out the normal daily functions, not by the degree of happiness. And the ‘carer burden’ had only the most fleeting of references.
The search for a cure. The need for care
The holy grail of academic and scientific research into dementia is to find a cure. And that’s really what the DAPA study was all about. Could exercise slow down cognitive decline? Could it perhaps point the way to a new line of inquiry? Or even if it wasn’t the key to a cure, could it perhaps at least buy us time until science finally triumphed? In that context, the DAPA research and analysis was impeccable. Unfortunately, exercise was getting a thumbs down: it made no difference to cognitive decline. Time to try something else then.
But for those of us whose lives have been turned upside down by dementia, patients and carers, there’s another priority. Yes, of course we want the experts to come up with a cure. Of course we support the call for more investment into medical research. But we’re realists. As the World Alzheimer Report 2018 tells us, there have been no significant medical breakthroughs in dementia treatment in the past 40 years. And ..
Just like cancer, we will begin to find the answers. Just like cancer, it’s going to take time. More time than we have, those of us affected now.
What do we need – we, and the 100 million people who’ll be diagnosed in the next 30 years as well as their 80 million carers? It’s not just hope for tomorrow, but help today. Let’s find answers for both cure and care. And if we can’t live longer, let’s at least live well.
Quality of life ≠ Wellbeing
I felt badly let down by the DAPA report. That flat final statement – “no noticeable improvements in other clinical outcomes” implied that exercise had no useful role to play in our dementia-affected lives – when our own experience, and plenty of other anecdotal evidence, suggests otherwise.
Digging deeper into the final report though, I suddenly realised why our conclusions were so divergent. The researchers’ interest was quality of life; mine is wellbeing. It turns out that the two things are as different as chalk and cheese.
The DAPA report references three seminal studies from the 1990s, all of them offering frameworks to measure the health-related quality of life. These studies remain influential today. In the UK, for example, they help to determine whether disabled claimants qualify for benefits payments. Questions are asked about:
- preparing and cooking food
- eating and drinking
- managing your treatments
- washing and bathing
- managing toilet needs or incontinence
- dressing and undressing
- Do I feel useful?
- Do I feel relaxed?
- Do I feel close to other people?
- Am I interested in new things?
- Do I feel confident?
- Do I feel loved?
Where was this groundbreaking research done? You’ve guessed it. At the same University of Warwick – in association with the University of Edinburgh. (If you’d like to check the current state of your own wellbeing, the 14-point Warwick-Edinburgh Mental Wellbeing Scale (WEMWBS) questionnaire is here.)
So why did Warwick ignore its own research as it conducted the DAPA programme? Was it because the team considered functional capacity more important than psychological health for people with dementia? Or was it possibly because WEMWBS is a tool designed for the general population, whereas the earlier quality of life studies focused specifically on dementia?
I worry that we too often put dementia in a ghetto. We separate it out from the mainstream. We assume that it makes people so significantly different from the rest of us that they don’t have the same feelings and emotions. Everything I’ve learnt in the five years since my wife was diagnosed tells me that this is wrong. With dementia, the need to feel useful, relaxed, accepted, interested, confident … loved … is stronger than ever.
In a society that truly cares, quality of life should be a given. Wellbeing must be our aim.
Questionnaires: inappropriate for dementia
So we pass the WEMWBS questionnaire to someone with dementia. They’re asked: “In the last 2 weeks, how often did you feel useful?” Goodness – they can’t remember the last 2 hours, let alone the last 2 weeks. And the time will come, eventually, when questions like this will become completely meaningless.
OK, so if that’s not going to work, let’s get their carer to fill in the questionnaire for them. The carer is you. You’re asked: “How often does the person you’re caring for feel loved?” There are five options: None of the time, Rarely, Some of the time, Often, All of the time.
What are you going to answer?
Will you be ruthlessly honest, as you probably would be if you were answering for yourself? Or will you be tempted to check the answer you know you probably ought to give? Not “All the time”. I’ll look like a Goody Two-Shoes – nobody will believe that. ‘Often’ then.
When you’re a carer – in fact, when you’re in any job – it’s hard to admit you’re struggling. It’s an admission of failure, that you’re not up to the demands of the job. We hate letting people think we can’t cope.
But if we’re saying that the key aim of The Bine is to improve wellbeing – for people with dementia, their carers, and their families – then we’d better be able to measure wellbeing outcomes objectively and accurately. If there’s a risk that people either can’t respond reliably, or that they tell us what they think we want to hear, then we need a better tool than a multiple choice questionnaire.
It matters. And it’s not just because we’ll use research to shape and then reshape Bine systems and strategies, in an ongoing quest for excellence. We’ll also need strong evidence-based research to prove to government that our methods work and deserve support and widespread adoption. That’s the way toward a universal dementia care strategy.
Care Combine research principles
So if questionnaires won’t work, what will?
Let’s look at the way a parent gauges a three-month-old baby’s sense of wellbeing. At this age, a child doesn’t have language, yet we know whether they’re comfortable, relaxed, interested, loved. How do we know? You could call it instinct, but observation comes into it too: we use our eyes, ears, hands, nose.
A parent generally just knows, but a social scientist might want a more accurate measurement. They might use frequency as a parameter, measuring smiles per hour ( – no speed limit!). Or time: what percentage of the day is the child crying? The scientist might be interested in the parents’ wellbeing too: how many hours of undisturbed sleep does the mother get?
The scientist would remember that every child is different. The fact that Noah smiles 25% less frequently than Emma may be insignificant. But if Noah is smiling 25% less frequently than he did last week, then perhaps further investigation is needed.
We’ll apply the same principles in our dementia research. Our wellbeing data collection and analysis needs to be:
Observable: we’re interested in what people do, not what they say.
Measurable: so that we have a basis for comparison.
Precise: we need to define exactly what we’re testing, so that if two reviewers observed the same behaviour, they’d interpret it in the same way.
Personalised: we’re measuring significant changes in wellbeing for an individual, not necessarily differences in wellbeing between different members of the group.
Objective: the reviewer’s personal interests or preferences should play no part in the study.
A prototype dementia wellbeing scale
WEMWBS points us in the right direction, but some of the statements in its 14-point scale would be hard to measure objectively – “I’ve been feeling good about myself”, for example. Others, sooner or later, would be almost a contradiction in terms for dementia patients – “I’ve been thinking clearly”. (Although I accept you could make a good case for keeping this statement in the list.)
Living with my dementia partner, I’d want to make additions to the statements: “I feel I can trust the people I’m with” would be one of them.
And the WEMWBS frequency scoring system doesn’t always work well. It wouldn’t for Trusting Others. A better approach might be a 5-step set of definitions on a scale of Trust <-> Fear. Something like this:
Trusting Others (in the past two weeks):
- Has always felt safe in the environment they’ve been in, cheerfully accepting help and companionship from anyone who’s offered it.
- Has generally felt safe in the environment they’ve been in and has willingly accepted help and companionship, except when, on at least 1 but less than 3 occasions, they’ve been paired with someone they don’t know.
- On at least 3 and not more than 10 occasions, has shown reluctance to work with someone offering help and companionship, but without displaying aggression.
- Is clearly unwilling to accept help and companionship from everyone except their own carer. And/or has sometimes accused another of causing them harm (whether the accusation is justified or not). But has displayed no signs of aggression.
- Has fiercely – and on at least 1 occasion, aggressively – resisted all offers of help and companionship from others. And/or has frequently accused another of causing them harm (whether the accusation is justified or not).
It’s not easy writing definitions like this. I expect – and would welcome – debate. What should be added? What omitted? And does this format comply with our research principles? Are the definitions observable, measurable, precise, personalised and objective?
If we proceeded in this way, what else would appear in our wellbeing scale for people with dementia? Here’s a first shot, in no particular order (as they say):
- Activity <-> Passivity
- Cheerfulness <-> Indifference
- Inclusion <-> Separation
- Companionship <-> Loneliness
- Engagement <-> Disinterest
- Achievement <-> Sense of failure
- Trust <-> Fear
- Comfort <-> Discomfort
- Calmness <-> Restiveness
- Appetite <-> Loss of appetite
Which of these would you delete or change? What would you add? Some of the elements in the WEMWBS list perhaps? Something you’ve noticed when you’re around people with dementia or even elderly parents? Put yourself in their shoes; what would give you a sense of wellbeing?
And then how would you write the definition sets?
I’ve outlined a prototype for our dementia wellbeing scale – but it’s just the beginning. We now need to debate these ideas, develop them, build a research model, test it, win academic endorsement, and finally use it. And we’ll need to do the same for a carers’ wellbeing scale, and a family members’ scale too. (We forget sometimes that the children of people with dementia can be terribly affected, even if they’re not the primary carers.)
We need work to start now. Even before we open The Bine, it will be important to start testing the current state of dementia wellbeing, so that we can make valid comparisons later.
Later this week, I’ll be introducing you properly to The Care Combine’s Research Director, Dr Zbys Fedorowicz. (Update: Zbys’s profile is here.) For now, let me just tell you that Zbys has an impressive track record as a researcher and reviewer, having spent over 13 years with Cochrane, the world leader in evidence-based medical reviews. He founded and directed Cochrane Bahrain, and for 6 years served as a member of Cochrane’s Steering Group and Board of Directors.
For our Dementia Wellbeing Research as well as for other projects that I’ll describe in this week’s Bine Update newsletter, Zbys is going to need a team. At present, in these early days of The Care Combine, we need to depend on the goodwill of volunteers, but we will be seeking funding support for this work as it continues.
So if you’d care to comment on this article with a couple of ideas (or objections!) of your own, please do so in the normal place, in the Comments Box at the foot of the page. But if you think you could have a larger role to play in the research team, either because you have observations from your personal experience as a person with dementia or as a carer, or because you’re an experienced researcher, then please contact me directly. Write to firstname.lastname@example.org with brief details of your background/experience, and your initial thoughts about the research principles and the prototype scale I’ve outlined.
I’m looking forward to the debate.
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