Justice Everywhere

a blog about justice in public affairs

‘Truman Care’ for Dementia

On the outskirts of Amsterdam, there is a small village called Hogewey, notable because all of its 152 residents have severe or extreme dementia. Hogewey is a gated model village, complete with town square, post office, theatre, hair salon, café-restaurant and supermarket – as well as cameras monitoring residents around the clock, and well-trained staff working incognito, holding a myriad of occupations such as post-office clerks and supermarket cashiers. Every detail of this ‘fake reality’ has been meticulously designed to ensure that the residents can experience life as close to ‘normal’ as possible. Critics have drawn parallels with the deception depicted in the 1998 ‘social science fiction’ film The Truman Show; but many Alzheimer’s experts have praised the pioneering facility for being the first to adjust ‘our’ reality to allow those with dementia to be in a safe and comforting environment – one built around life rather than death.

Taking inspiration from Hogewey, the Grove Care nursing home in Winterbourne, Bristol have developed ‘Memory Lane’; a recreation of a 1950s high street, including a Post Office, pub, bus stop, phone box and shop windows full of memorabilia.

I’d like to briefly outline two sets of reasons for thinking we should move towards this model of care (all-day reminiscence therapy, or ‘Truman Care’ if you like), and to then briefly discuss what I assume to be the main problem facing this kind of move. The importance of this discussion should not be underplayed. In the UK alone, (i) there are more than 850,000 people with dementia (due to rise to more than 1 million by 2025); (ii) £23 billion is spent per year on caring for those with the condition – double the sum spent on cancer and three times that on heart disease (plus, unpaid carers save the economy £11 billion a year); and (iii) a quarter of hospital beds are occupied by those with dementia. In David Cameron’s words, dementia is “one of the greatest challenges of our time”.The Hogewey model provides an innovative response to the challenge of dementia care; but is it an ethical one? Isn’t it tantamount to deceiving people with dementia about their reality; and, if so, is this permissible? One way to assess this question is by reference to the core principles of biomedical ethics: (1) beneficence and/or non-maleficence, (2) respect for persons (i.e., autonomy), and (3) justice.

(1) Beneficence: All-day reminiscence therapy aims to relieve the anxiety, confusion and anger that people with dementia can feel. Although the core concern is that many of the residents are not aware that the place in which they live is a care home, it is clear that this is in fact the essential point of Hogewey. Reminding a person of the ‘truth’ of their situation can be confusing and/or harmful; and within hospital-style environments, is it not uncommon for people to try to escape and return to their real home. Hogewey’s residents require less medication because they are (a) more active and (b) engaged in community. On the latter, studies have shown that isolation reduces the production of myelin (a fibre that maintains our nerve cells); hence, the countless studies reinforcing how many dementia patients feel lonely or isolated, juxtaposed with Hogewey’s considerable success, calls into question how much of dementia is a result of disease, and how much is a result of how we treat it. So, there are good beneficence-based reasons to favour the ‘Truman Care’ model.

(2) Respect for persons: Much of the debate around autonomy and dementia has concerned the issue of the authority of advance directives. Yet there are other respect-based issues to consider. Hogewey shows respect for persons by respecting the continuity of life as far as possible: making each resident feel at home (connection with pre-dementia self) has an impact on current ‘experiential interests’ (well-being of the person with dementia). One way in which they achieve this is by having 7 different “lifestyle categories”: e.g., gooise is for those from the Dutch upper class, and has chandeliers, lace tablecloths, and carers that behave like maids; whereas ambachtelijke, for those who were once in trades and crafts, has plain décor and serves simpler food. Reminiscence therapy has been shown to trigger the recollection of past events and experiences (boosting memories by an average of 12%) and allows residents to feel comfortable in familiar surroundings, thereby reducing confusion and anxiety. Another way of respecting persons (both as they are and as they were) is to focus on everything they can still do, rather than things they can’t. Residents are encouraged to keep up day-to-day tasks they have always done: gardening, grocery shopping, going to the hairdresser, popping to the café, helping to prepare meals. This respects both residents’ personhood and their individual person more than traditional care homes; and this offers a good respect-based reason to favour the ‘Truman Care’ model.

In all likelihood, the main problem facing this innovative and humane care option would lie with affordability. Hogewey cost £15 million to build and is only able to house just over 150 residents. This raises issues concerning distributive justice.

(3) Justice: Because we live in times of scarce resources, especially medical and long-term care resources, there are some who contend that those who can ‘benefit’ the least – which might be thought to refer to those with significant disabilities and/or those whose personhood is undermined by their disease – may end up having the lowest moral claim on these resources. This raises a difficult issue; but it does so for conventional dementia care as much as for the Hogewey model. And since we currently spend such a large amount of public money on caring for those with dementia, and since the cost per resident of this radically different approach is not much higher than most regular care homes in the UK, it appears that there is an all-things-considered reason to favour moving towards ‘Truman Care’.

 

Fay Niker

Fay is a PhD student in political theory at the University of Warwick, working on the ethics of behaviour change policy. In general, her work focuses at the intersection of psychology, public policy, and political philosophy.

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13 Comments

  1. Dear Fay
    thank you for this very interesting take on the problem of dementia care, which is becoming more and more serious in almost all European countries. The number of people with dementia will grow exponentially during the next decades, and care for them will be highly expensive. Hence, there is a serious issue of justice.
    I also like your way of tackling the issue whether to build villages for demented people via Beauchamp and Childress' approach. I agree that beneficience and respect for persons can give us several reasons to view models villages for the demented in a positive light. Also, from the point of view of distributive justice, it is questionable whether *good* care for the demented is really much cheaper in traditional settings like the dementia ward of a home for the elderly.
    Still I am wondering whether the approach is broad enough to deal with the negative criticism that is often brought forward against building villages like that. I am thinking of the societal views and possible negative effects that might ensue (for instance Sweden has decided against building model villages on this ground). The main objection often claims that a model village is nothing more that a ghetto for demented patients:
    Even though the village is very pleasant, demented people are still locked away from society at large, which does not have to deal with them. There is no need of dealing reality of the illness for society, which may make people insensitive towards it. The question from the point of view of social ethics is, in my view, how this attitude may change society. One may worry that there are negative effects. For instance, old people may even be forced to go to these places or families may be severly pressured. Alsoe, ven though they may not realise it due to their memory loss in dementia, it still seems disrespectful towards the demented to lock them away in this way. We would not do this for other kind of disabilities, even though we may be virtually sure that the people affected would not care.
    The question is, I think whether we should strive to integrate the demented as group into society giving them the right and possibility to participate in a real way, to the extent that they still can. In Germany, for instance, there have been appartment communities of demented people in normal appartment buildings (e.g. here in Munich: http://www.demenz-wg-edelweiss.de/). Also there are good examples of building dementia friendly communities that strive to integrate the demented by educating the population (http://www.demenzfreundliche-kommunen.de/).

    I do not fully agree with this objection, but I think that the issue of inclusion and participation should be raised with regard to dementia patients and their families. That is something I do not see in Beauchamp and Childress' approach. What do you think?

    All in all, very interesting piece, thank you very much!

  2. Hi Fay, I haven't heard of the Hogewey community before – thank you for writing on such an interesting topic. I don't really have an overall view on the issue you raise, but it strikes me as odd to criticise this care model for being deceptive, or putting residence out of touch with reality. After all, being out of touch with reality – or, more accurately, with some aspects of reality – is part of what makes dementia dementia. So, to the extent to which being in touch with reality is valuable, it seems to be a kind of value that's anyway unavailable for individuals with extreme forms of dementia.

  3. Hi Fay, thanks for this interesting post. I share Rebecca’s unease about creating a separate, sealed-off reality for people with dementia. But I find this example nonetheless very inspiring. Why not have mixed approaches? I know from my grandma’s retirement home that they tried, as far as possible, to give people a sense of reality that would keep them in touch with their earlier lives – for example, they would allow them to bring their own furniture, as far as possible. They also played horrible music (hit songs from the 70s or so) which some of the elderly people suffering from varying degrees of dementia seemed to greatly enjoyed, and I remember thinking that they must be playing those things because they are from the time in which these people were younger. So I wonder whether one could incorporate insights from this model (and the positive points with regard to beneficence and respect you mention) while at the same time keeping costs somewhat lower (which might help with regard to justice) and keeping these people more included in society?

  4. Thanks for the fascinating post, Fay. I am interested to join the debate raised by Rebecca and Lisa and I am wondering about the potential ways in which nexuses could be formed with communities such as Hogeywey. It strikes me that communities can be more or less 'gated' and more or less 'visibly' gated. It may even be possible for there to be 'interaction points', such as social spaces (perhaps cafes) that could be used by both those within and without the community. On such possibilities, I guess my question is similar to Lisa's: would it be possible (and financially feasible) to incorporate these dimensions? I have some sense that the social exclusion and insensitivity objections would be stronger if the answer to these question is 'no' and would be interested to hear your thoughts.

  5. My sincere apologies for my slow responses to your comments. I will address them now, and hopefully the debate can continue! For anyone interested in hearing more about this issue of dementia care, there's a talk at the RSA on Thursday that might be of interest: https://www.thersa.org/events/2015/02/the-dementia-timebomb/.

  6. Rebecca, thank you very much for this really helpful comment. This gets at a hugely important issue; and one that, as you say, might not be adequately accommodated within the Beauchamp and Childress approach to biomedical ethics (perhaps because it incorporates all three categories in one?). So, my initial response to the 'ghetto' criticism is that integration, both by (i) inclusion and participation in the wider community and (ii) changing societal attitudes to old-age and dementia care, would ideally be a priority for this policy area. Unfortunately, I think there's always going to be a compromise on this between good, safe care and community integration. In no way do I want to defend Hogewey as being a model of what justice requires; but it is worth mentioning that this care home is actively seeking to forge links with the local community, by bringing the local community in (since it's not necessarily safe enough to take the residents out into the community). Some of the money for the centre came from sponsors and local fundraising and it is active in integrating the centre into the local community: "anyone can come and eat in the restaurant, local artists hold displays of their work in the gallery, schools use the theatre, businesses hire assorted rooms for client presentations". I don't know if this model goes some way towards answering some of your concerns?

  7. Lisa, thanks for your comment. Yes, I think that the use of 'reminiscence therapy' is now fairly widespread across care homes: trying to keep people in touch with the life that they have largely forgotten, but also – and maybe, primarily – as a form of 'treatment', as it were, for the confusion, anxiety and anger that often accompany forms of dementia. I have no doubt that a mixed approach is a good idea; however, I do question your final point, namely, that traditional care homes keep people more included in society. Do you think that this is the case? My own sense is that residents of these care homes are (at least) as excluded from society as the residents of Hogewey (and that they are more prone to the patient mistreatment and achingly low levels of morale that we've heard about quite a bit from media and governmental reports recently). Perhaps you have a better sense of this then me though? I'd appreciate hearing your thoughts.

  8. Andrew, thanks very much for this comment. You are on the money, as it were, because my response to Rebecca's comment outlines precisely these kinds of 'nexuses'. Hogewey seeks to be active in integrating the care home into the local community in a number of ways: anyone can come and eat in the restaurant, local artists hold displays of their work in the gallery, schools use the theatre, businesses hire assorted rooms for client presentations. (I'm not sure if this responds to precisely what you're getting at, though, because these are 'one way' interaction points – would you want it to be more of a two-way process?) In fact, more than being financially feasible, it seems to me that this kind of model is necessary not only for the kind of integration that we might think justice requires, but allows for 'villages' like Hogewey to generate some income that helps towards its running costs (i.e., making ventures such as this financially feasible in the longer term). But might this kind of model raise issues of its own? For instance, off the top of my head, does it (adequately) respect the individual residents to have groups of school children or businessmen coming into, effectively, their care home, partly for the sake of 'normalising' or de-stigmatizing the condition of dementia within society?

  9. Thank you for this helpful comment, Anca. Of course, you are correct; and perhaps a large part of the problem here is because the likening of Hogewey to 'The Truman Show' is unhelpfully dis-analogous (which is why my calling this kind of care 'Truman Care' is probably unhelpful too). There are at least three ways in which the analogy is problematic.
    (1) First, Truman is capable of living an independent, autonomous life and is being prevented from doing so by all sorts of subtle and not-so-subtle means; whereas, the residents in Hogewey are not people who are capable of living an independent, autonomous life – though they are capable of living some kind of fulfilled, happy life with the right kind of support (which Hogeway provides).
    (2) Second, all of Truman's relationships, including his most intimate and life-defining, are artificial; whereas, the residents' most intimate relationships are not being artificially replicated – people aren’t pretending to by their husbands or wives, or children, or parents. It is true that their care-workers perform all sorts of services like hair-dresser, shop-assistant, etc., but these are all things care workers would do, or organise, in a more ‘normal’/ traditional care-home, and they certainly seem to fit inside the remit: they are caring for the people by supporting them in as-active a life as possible.
    (3) Third, Truman is being watched 24/7, unbeknownst to himself, by an audience of millions, even in some of his most intimate moments (as a form of entertainment); this is obviously not the case in Hogewey: although residents are monitored around the clock, no-one is watching them other than care-givers, who use this only as a means to care fully and prevent harm to the residents. True, the residents (probably) don’t know how much people are keeping an eye on them, but this feeds back into the other points, about the resident's condition (lack of autonomy; lack of 'being in touch with reality') and necessary care-giving.
    I'm not sure if this helps to clear up why the 'deception' critique doesn't hit the mark, at least as I see it. Do you have any further thoughts?

  10. Hi Fay, thanks for your reply. You are right, many „normal“ care homes isolate people a lot from society, and what you say in response to Rebecca suggests that Hogewey is better integrated. My comments was motivated by the problem of cost – building new villages like that seems hugely expensive, whereas we already have some existing infrastructure, so one could try to improve things there. So the question would be: if we distribute resources across existing institutions for them to take measures that improve a) people’s well-being through things like „reminiscence therapy“, and b) social integration – how would that compare to a policy of building more Hogeweys, which could, presumably, only be done for a rather limited number of people? Considerations of justice might push towards the former, while one could keep a few such village models in order to learn from them which strategies work best.

  11. Fay, thanks for this. I think your last point to Andrew is very interesting. In the comments worries were raised about the negative implications of exclusion but, and building on Anca's question, do we know whether exclusion as such has negative impact on the patients themselves? Do they actually do/feel better(more respected) in a more integrated environement? Or is the worry the worry more about the impact this has on other members of society? I have my doubts about the objection that such projects lead to de-sensitizing the general population (thus lack of funding etc..) and that therefore we should keep the patients as close as possible (even to their detriment?). Surely there are other ways of spreading awareness. Do you have thoughts on that

  12. Thanks Siba, that's really interesting. Unfortunately I don't know any of the empirical stuff (if, indeed, it exists) about the first-person experience (welfare differentials) of dementia patients in more vs. less 'socially integrated' environments. (Do you know of anything?) But to a certain extent, what Hogewey is trying to do is to emulate a socially integrated environment without having any of the problems that come with it (i.e., ensuring for the residents' safety). They are able to do all of the things that they might otherwise be able to do if they did not suffer from dementia, such as go grocery shopping, play bingo, get their hair done, or whatever, and can thereby interact with the grocery store clerk, the others playing bingo, their hairdresser and other clients at the salon, but can do so within a safe environment that caters for their condition. From what we know about the results at Hogewey, being socially integrated in this way is in fact a hugely important factor in explaining why the residents there are so much happier than they would have been at a more traditional care home. So we've got an interesting issue here when we think about 'social integration as being good for those with dementia': the social integration that benefits them the most and which most adequately respects their person and their current condition, does not in fact require any integration or interaction with 'society' at large (I suppose that's the 'Truman Care' aspect). But, as you point out, we have this other issue seemingly pulling us in a different direction: that somehow we owe it to those suffering from dementia to not 'ghettoize' them. Letting go of this point perhaps brings us to your point about other ways of spreading awareness; and I'm not sure exactly what this might require.

  13. Good. That's helpful, thanks. I now better understand the full force of your initial comment. Not being anything close to an expert in this policy area, my non-expert view would, I think, still want to say that, given that we're already spending such a large amount of public money on dementia care (£23 billion is spent per year), we should radically rethink the medium- to long-term model for caring for the elderly who suffer from this condition *in order to be able to spend this money more effectively and improve the care in terms of beneficence, respect and justice*. But you are absolutely correct, this radical rethink of the essential 'infrastructure' of dementia care would need to be carried out in stages, and the initial stages are very likely to resemble your view as outlined above – a ‘learning from’ the Hogewey model, as is shown to be the case in the photograph of Grove Care nursing home.

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