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’.