Beware Dementia Inc

Beware of dementia care ‘fads’ which promise to improve the provision of personalised care but, in fact, do quite the opposite, says Dr Stephen Judd.

Above: Dr Stephen Judd presents at the Risky Business International Dementia Conference

By Yasmin Noone

Dementia care service providers that blindly partake in the person-centred care ‘cult’ are at risk of ignoring their consumer’s individual needs and wants, despite best intentions. 

This statement was delivered by the CEO of HammondCare, Dr Stephen Judd, to an auditorium full of delegates at the Risky Business International Dementia Conference in Sydney last Thursday.

Speaking on how best to ‘navigate the dementia jungle’, Dr Judd warned providers against naively following sector trends which promise miracle dementia care formulas but actually do the opposite: ignore the individual needs of the person with dementia.

“All too often in this industry, we are guilty of chasing after fads, trends and a virtual army of charismatic consultants without necessarily asking ourselves why,” said Dr Judd.

“We are too easily sucked in by the allure of miracle solutions and quick fixes. On the one hand, it’s easy to see why we fall into the trap – there are so many finely presented people and programs available, all promising to unlock the secrets of ‘how to do’ dementia care.

“It’s no exaggeration to say that today we have a dementia industry – an industry that pumps out a huge range of new and competing methodologies, philosophies and approaches which all claim to provide a definitive and simple solution.

“Ladies and Gentlemen, Dementia INC is alive and well!”

Partaking in “Dementia Inc”, as Dr Judd referred to it, does not lead to improvements in quality of life or make dementia care provision easier.

“On the contrary, the huge range of ‘dementia solutions’ being churned out by the dementia industry just makes everything more confusing.”

However, the head of the dementia care organisation clarified, not everyone or every organisation promising dementia care services is opportunistic.

“I’m not saying that every consultant is dodgy…I’m saying it’s really hard to navigate the jungle that is Dementia Inc.”

Identifying the trends that make navigating the dementia jungle more confusing and complex, Dr Judd first pointed to the ‘Kitwood cult’ as the most prominent one in the industry.

Professor Thomas Kitwood from Bradford in the UK, who initially developed the concept of ‘person-centred care in the 90s, focused on the move from a medicalised to a more social and individual model of care for people with dementia. 

His death in 1998 inspired a greater following in his teachings and now his methodologies are promoted as best practice in dementia care.

“When a cult forms it usually says a lot more about the followers than the ‘leader’, and after Kitwood’s death, a passionate group of disciples began forming and before long, Kitwood’s name came to be revered and his teachings regarded as sacred.

“…And still today, in many quarters, St Tom of Bradford can do no wrong. Talking to some people, you get the impression that, “If you follow Kitwood’s way, everything will be okay…

“This presents a serious problem because in practice, some of Tom Kitwood’s ideas are simply not feasible, even though saying so in some circles verges on the blasphemous.”

For example, he said, dementia care mapping is often held up as the “gold standard” for monitoring and assessing people with dementia.

“On one level, it’s great…it’s strength is that it is comprehensive. But as a result it is very resource intensive.”

He added that the Kitwood term, ‘person-centred care’, has also become a catchphrase and is at risk of being rendered meaningless through constant misuse and overuse.

Dr Judd also made reference to the increasing trend in dementia care that is humour therapy.

While these types of programs are positive because they emphasise the person behind the condition, other therapies (art and music therapy) can prove just as effective.

Humour therapy also commonly employs the use of clowns. And “as a result there’s been a breakout of red noses and silly hats in dementia units across the country”.

But, while some people find clowns funny and entertaining, many people don’t and a number of individuals are even frightened of them.

“…My question is this: what is it really like for a person with dementia who also has a fear of clowns to be sitting in a water chair and then to have a gigantic, red nose stuck in their face?  

“Let’s not prescribe clown therapy to large groups of people just because they have received a dementia diagnosis. There are other ways of creating fun and humour – why don’t we explore them?

“In short, why don’t we really focus on the person?”

Finally, Dr Judd spoke of the trend towards specific trademarked models of care. However many packages, some of which claim to be ‘the first’ or ‘the best’ in the Dementia Inc marketplace, often defeat their purpose because they replace an individualised approach with a formulaic trademarked package of care.

“I think there is a stack of strong evidence to show how we can do things better. It’s simple:  let’s focus on the individual, on the social environment and on the physical environment.”

“…We don’t need to join a cult; we don’t need to slavishly mouth catchphrases as our mantras.   We don’t need the complicated consultants or the copyrighted and trademarked models.

“What we do need to do is ask the simple questions based on well-established and readily available principles – and then follow through on them.

“Let’s really focus on the individual. Instead of simply lumping everybody with dementia together into one, big, ‘one size fits all’ group, let’s ensure what we do is individualised; let’s look to improve life for those we support –  rather than working out how to make it simply easier for ourselves.

“…Are you up for the challenge?”

Tags: alzheimers, clowns, dementia, hammondcare, humour-therapy, kitwood, person-centered-care, risky-business-international-dementia-conference, stephen-judd,

10 thoughts on “Beware Dementia Inc

  1. Well said Dr Judd, person centered care is miss understood by many in the industry and not to mention undeliverable to many that are living with their individual signs and symptoms. Add to this the cost to deliver good specialised dementia care and consider the current ACFI debarkle we are doomed. I will be in for the challenge have no fear. So will our team at frontline care solutions.

  2. Great piece, Dr Judd is a great advocate who speaks honestly, eloquently and with great compassion for older people. Keep up the great work.

  3. excellent article, expresses very well how we need to respond to each person with dementia

    for those who haven’t yet spent time with dementia sufferers it’s important to say that the way the disease progresses is as individual as the people it strikes

  4. I couldn’t agree more, thanks Stephen for sharing your insights. Some people try to make you feel “less” just because you haven’t jumped on the “Person Centred” wagon.You have to know your residents , your staff capabilities and your budget limitations before embarking on any dementia program or methodology.I prefer to tell people we offer the Maroba Alternative ! That applies to all aspects of our care and service, we can’t be like anyone else, nor do we try.

  5. Well said Dr Judd – much time and money is wasted in residential care facilities trying to find a ‘magic’ solution. If the money was put into good basic dementia training for all staff and managers it would make a difference to people with dementia and they would then receive individualised care that valued and respected them as a person who is unique. We all have individual needs and wants (regardless of dementia) and are the first to shout loudly if we get put in a basket with others – that shouldn’t change just because we have to move into a care facility or have others come into our home to assist with our care. Individual choice in all aspects of our life should remain with us until the day we die.

  6. Stephen, you are spot on.
    There are no “therapies” in dementia care. Everything that a person with dementia does is an ACTIVITY. Any particular activity may have a positive outcome for some people and a neutral or negative outcome for others. So, “clown therapy” is nothing but an activity with red noses and slapstick that will make some people laugh and will scare others. The same goes for music therapy, aromatherapy, water therapy, doll therapy, Snoezelen therapy, ……….
    I have seen people with dementia derive much pleasure from such simple things as squeezing a tennis ball, rolling up paper, twisting the sleeve of their cardigan. Why not now proclaim these activities as “ball therapy”, “paper therapy” and “cardigan therapy”?
    The nonsense attached to these claims of therapies as panaceas in dementia care, and the blind acceptance of these claims by decision makers in aged care, is one of the reasons that I retired from my dementia care consultancy some five years ago. We should all have taken up your fight then. Keep at it. Your message needs to be heard before commonsense is totally eroded.

  7. Seems to be the missing the fundamental point that Kitwood’s work was based on the treating of people with dementia as an individual! Just beause society refuses to pay for good quailty dementia care shouldn’t be a reason to say that we shouldn’t be aiming for it, going by that logic we would still lock up people with mental health issues and intellectual disabilities in big hospitals! We only call them therapies beacause residential care has failed to realise that people need environments to live their lives to the full. Create a pseudo hospital, strip peoples of opportunities for meaning and relationship then try and fill the void with therapies! We still have a long way to go and I don’t think Stephen’s comments are particularly helpful in getting us there.

  8. It is hard to take a position on Stephen’s message as his message is quite confused.
    “let’s focus on the individual, on the social environment and on the physical environment” is providing person centred care. Yet Stephen tells us to throw out person centred care
    Tom Kitwood’s version of person centred care has had many detractors over the years and most “disciples” are people who have researched his ideas and changed them as a result of the research.
    Humour in care is being tried as a therapy through research. As is art. I recently heard a Doctor I have high regard for dismiss all non-medical therapy as non-therapy as it did not have RCT level evidence. Later he preceded to say that a medication that has no RCT evidence for use in BPSD was a good medication for the management of behaviour.
    I would argue that the best treatments are the treatments with the best randomized control evidence that they work. Unfortunately it is difficult to put a prescription pad out or develop research around such a heterogenous group of conditions with heterogenous symptoms.
    The most successful dementia treatments are the ones that do as both Stephen and Tom Kitwood suggest and focus on the individuals needs. Of course in an economically restrained environment it is not always that easy to do that as people’s wants are greater than fiscal capabilities.
    Additionally Dementia is an illness and as an illness of the brain it affects peoples capacity to share what their needs are and realise what needs to be done to meet them.
    To me-It would be better if Stephen’s statement was “Beware of people or products with all the answers and a one fits all approach”. Instead of criticising many good projects that are often taken out of context and begin to be used widely before the evidence has been developed to support their use.

  9. I certainly agree with Stephen Judd about the person-centred/dementia bandwagon. Lots of organisations and consultants offer “the answer” – and aged care facilities are looking for just such answers, ones which can be distilled to a bunch of strategies, or an activities “therapy” program etc. However, I think this demonstrates a complete misunderstanding of what person-centred care is about. And indeed I think Stephen Judd sets up a straw man to knock down in the way he explains person-centred care.
    I have no interest in being an apologist for Kitwood, though I think he made what was a dramatic leap in showing a way to care beyond the medical model. I think it’s important to recognise that person-centred care as an approach has been further developed by many people, so it has moved beyond what Kitwood wrote about.

    I too have trouble with the “person-centred” word because it has been bandied around as a concept, and in practice, has been warped by the desire of people to give and to receive easy answers. In my own teaching, I have come to talk more about culture change, since I believe this says more about the nature of person-centred care than anything else. It also implies that this type of care is not just for people with dementia but for all people in aged care.

    I think anyone reading the more recent writings on practice and theory in person-centred/culture change would see that the following points are emphasised:
    1) p-c care is not just about a new activity but a challenge to complete change the culture of care. (and people are doing this – look at the Long Term Care Guide on the Picker Institute website where there are many examples of substantial changes in practice in Ecumen – a U.S. aged care facility. It is also a process and not something you actually can ever say “we do it” – you’re always working towards it.
    2) When we talk of person-centred, we talk of people in relationship, ie this is not about individualistic “consumer” choice, but about recognising that the person lives in the context of relationships, and that therefore all relationships – person, family, staff, management – need to be nurtured. It’s not about catering for every whim of each person (indeed an impossible task) but about creating an environment where residents are able to feel that life is still worth living.
    3)Nurturing relationship is about knowing the person, knowing how to be with the person – and this is what makes it possible to work with the person to find the suitable and meaningful activities for them to engage in. Bear in mind, that activity does not necessarily mean action. Social and emotional environment are part of what helps make life worthwhile.
    4) In summary, RELATIONSHIP is at the heart of care, and from that basis, the person with dementia is helped to feel accepted and included, is helped to engage in a way of living that is meaningful and to feel that it is worth getting up in the morning.

    I suggest all of this is totally possible and there are facilities who are doing the “impossible”, within current budgets and constraints. However, it does need a whole organisation approach – everyone involved in change – because of the strength still of the medical model of care, and it needs a different type of training from the traditional task-oriented focus.

    Culture change is of course much more scary, but to my mind more realistic.

    I totally agree with Stephen about “packages” and “models”. It drives me mad to hear staff say “oh, they like music, don’t they”. Who is this “they”??
    No, we as carers are going to have to learn to truly be present to our residents, in relationship, rather than function on automatic as we “deliver” multiple therapies that “they” supposedly “always” like.

  10. Im probably adding this a little late but still i would like to add that Tom Kitwoods work has been around since the 80’s and is not a new fad, cult or phase that we should all follow blindly. Tom provided us with the tools to ‘support staff and care givers’ to provide a much more centered approach. It seems we all want to provide PCC but are getting too caught up in labels. I do agree that a blanket approach is not the way forward if we want to provide individualised care. As long as people recognise that then i dont see anything wrong with adopting whatever paperwork helps staff and care givers to learn something new or to provide something different to an individual.
    My ELP would definately say ‘NO CLOWNS’!

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