Does a focus on choice not inequality fail people wanting to live better with dementia?

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Equality means all things being equal. Critics of equality say it’s a race to the bottom, but I feel that anything which exacerbates inequality, such as marketisation of healthcare, will hamper the experience of a person living with dementia – in a market called a ‘consumer’.

But clearly inequality in service provision can clearly hamper choice: so the question comes for ‘consumer experience’, should one be concerned about any infrastructure which promotes inequality as regards living better with dementia? Categorically, the answer is “yes”. The Japanese has been promoting end-of-life care at home or at nursing homes, rather than at hospitals, which is expected to increase patients’ choices of places to get care. In 2006, a special fee schedule for clinics registered for providing planned home care was introduced, which highly values care in communities. One of the major difficulties is that almost all clinics in Japan are single-handed. Group practices and polyclinics are not so popular. Therefore, in order to provide 24 hour home care, clinics have to collaborate with other clinics and hospitals. This process is not so easy, and it is especially difficult to find other clinics providing the same level of home care in geographically small areas. One newspaper reported that around 30% of ‘home care support clinics’ had not provided end-of-life care in the community at all. In addition, inequality in the number of ‘home care support clinics’ among prefectures was reported in the newspaper.

Whilst the narrative appears to be pre-occupied by ‘consumer choice’, it is impossible to get away from inequality, and – with the lower the income – the less convincing the ‘choice’. This is important. If you look at the worldwide picture of dementia, it’s clear that inequality has a massive rôle.

Take for example Prince and colleagues (2012). They reported on a population-based cohort study of all people aged 65 years and older living in urban sites in Cuba, the Dominican Republic, and Venezuela, and rural and urban sites in Peru, Mexico, and China, with ascertainment of incident 10/66 and DSM-IV dementia 3-5 years after cohort inception. They found supportive evidence for the cognitive reserve hypothesis, showing that in middle-income countries as in high-income countries, education, literacy, verbal fluency, and motor sequencing confer substantial protection against the onset of dementia.

I feel that the notion of ‘choice’ has now cumulatively given consumerism a pedestal status in dementia discussions, when often this choice is either weak or absent altogether.  The idea of choice and competition, ideally suited to private sector ‘suppliers’ or ‘providers’, hides behind that the assumption that improved choice drives up quality (and possibly drives down cost). There is actually a weak evidence base for this, instead leading to the finding that few large suppliers tend towards a homogenised product at a higher profit margin. Certainly, the idea that this market competition drives up efficiency is virtually non-existent.  From this weak starting point, I see no reason to triangulate consumerism with care. I think it’s perfectly possible to articulate a narrative based on individuals following a diagnosis of dementia taking control of their lives (i.e. autonomy), and the aim of public policy should be try to address other key aspects which will affect this autonomy, such as other health, education, housing or employment. Unsurprisingly, therefore, I come from a ‘whole person’ aspect. It’s clear from a consistent stream of literature that pre-existing inequalities such as affluence or income or education can affect persons’ access to information.

Whatever one feels about choices ideologically, it is hard to escape quality of choices is in some way related to the quality of information. I feel our aim should be to reduce inequality through lack of information rather than to fixate people’s minds on ‘shopping around’.

Information can undoubtedly be useful. For example, the University of Wollongong has published a freely available booklet “Driving and dementia – a decision aid” (v3 2014). The decision tool is available for download as a hard copy and as an online version (see blogpost here).

“the aim of this booklet is to assist you in deciding when to stop driving after receiving a diagnosis of dementia . It is hoped that early planning for driving retirement from driving will avoid the need to stop suddenly”, Dr John Carmody, A/Prof Victoria Traynor, Prof Don Iverson and Cathie Andrew (OT).

Given that I feel the notion of choice can be bogus, I don’t think the emphasis on consumerism driving care is an appropriate one. This construct relies too heavily on a power imbalance between provider and recipient, and views social services and care as some sort of commodity like milk or sugar. But human relationships are hard to convert into a financial figure, and it is not fitting, I feel, to know the cost of everything and the value of nothing.

I think it is unsurprising that a properly resourced system where people’s relationships are maximised, say through the Senses Framework, will optimise the feeling of wellbeing in a person who has received a diagnosis of dementia, but this should be seen as a success of consumerism – rather, it should be more accurately be viewed as running in parallel with consumerism, if you are driven by the goal of maximising shareholder dividend.

But maximising shareholder dividend is not an ethic – it is a means to some sort of end.

Paul Krugman, for me, dealt with the problems of ‘consumerism’ in an excellent article for the “New York Times”:

“But something else struck me as I looked at Republican arguments against the board, which hinge on the notion that what we really need to do, as the House budget proposal put it, is to “make government health care programs more responsive to consumer choice.”

Here’s my question: How did it become normal, or for that matter even acceptable, to refer to medical patients as “consumers”? The relationship between patient and doctor used to be considered something special, almost sacred. Now politicians and supposed reformers talk about the act of receiving care as if it were no different from a commercial transaction, like buying a car — and their only complaint is that it isn’t commercial enough.”

Fundamentally, I feel that inequalities, not choice and consumerism, should be a focus of why some people with dementia aren’t living better. It is possible that consumerism improves health inequalities – but it is not at all probable, if we look at the evidence base? The consumerist exponents can pick numerous fruit from the commodification tree. When you focus the mind on spending, it focuses you on rationing – “not having a blank cheque book” at one end, but possibly somebody having insufficient money through a personal budget at another. The transfer of this rationing from the State to the consumer means of course that rationing of good care cannot be blamed on the provider, but the consumer or user of services.

But persons with dementia did not ever wish, I feel, to have the further label of ‘consumer’ on top their label which leads to the ‘prescribed disengagement’ articulated by Kate Swaffer.  And with the illusion of choice, there brings in the option of topping up choice, through an externality such as vouchers.   Relationships between people with dementia themselves are powerful, as you will soon learn from any person living with dementia involved in any peer internet group. While ‘experts’ are expected to share their knowledge, it is not as socially accepted for people without the expert status to lecture others. Social positioning theory looks out how people establish power relationships through speech, and how this can enhance a sense of Self and identity. This is of critical value, for example, in couples living with dementia, and it is that sort of approach which is valid in real life, whether or not anyone is ‘consuming’ services from somewhere.

The danger with treating services as commodities is that you treat the ‘end users’ of such services as commodities too. Ultimately what affects relationships is the quality of communication. The approach of  a clinician, not notorious for emotional intelligence, to assessment and management may not be culturally appropriate or relevant for diverse communities. But when working with such communities it is important to recognise the myriad differing understanding of wellbeing, health, illness, mental health and dementia, knowledge of service availability and pathways to access. These factors will vary widely and affect the way people interpret their situation and react to care and treatment. New initiatives can help a lot, but its value, here too, I feel can better explained by reducing inequality in healthcare rather than improving choice.

It might however be possible to improve a ‘consumer experience’, if you are paying for a care service, by reducing inequality. Elder abuse is any act that harms older people and that is carried out by someone they know and should be able to trust such as family or friends. Such harm can be financial, physical, sexual, emotional or psychological, including mistreatment or neglect. IIn 2009, Fraga and colleagues did a project on abuse of elderly in Europe (ABUEL) was conducted in seven cities (Stuttgart, Germany; Ancona, Italy; Kaunas, Lithuania, Stockholm, Sweden; Porto, Portugal; Granada, Spain; Athens, Greece) comprising 4467 individuals aged 60-84 years.

It had  already been known that there exists is a societal and community level dimension that adds information to individual variability in explaining country differences in elder abuse, highlighting underlying socioeconomic inequalities leading to such behaviour.  A three-year ECCV project has recently aimed to increase awareness of elder abuse in ethnic communities (2012-2015). ECCV has worked in partnership with ethnic and multicultural organisations and Senior Rights Victoria to deliver culturally appropriate messages about elder abuse, its prevention and pathways to support.

There can be a disparity between trainees wanting to work in rural and urban settings, and the solution to this is more to do with decreasing inequality than improving choice, even the upshot might be improved competition and choice in learning opportunities for trainees. The “Interprofessional Learning (IPL) program” at the Day Therapy Unit (DTU) in Geraldton, Australia, has facilitated the development of clinical competencies within a rural context for allied health students since January 2012. This program was developed through the ‘Allied Health Clinical Training Model’ project completed by Western Australia Country Health Service with funding from Health Workforce Australia for 2012-13. Feedback from students on completion of placements has been positive and has indicated an increased willingness to consider rural job opportunities. Additionally, four previous students have been recently employed in Geraldton.

It is difficult to deny the drive behind reducing inequalities, or facilitating personhood. But implanting care transactions by care providers in ‘person centred care’, because of the nature of the commercial market, itself imposes inequalities which can hamper a person living better with dementia. Any discussion of the ‘consumer experience’ must therefore co-exist with a critical look of whether inequalities have been minimised, why and how. And, if not, why not?

Marketing something as ‘person centred care’, where poorly motivated staff are on zero hour contracts with exclusivity clauses, cannot conceivably the all-embracing solution. Furthermore, there is a technical legal point, that as such a person cannot have a legal right to choice through a personal budget. On the other hand, a person can have a legal right to equality in many jurisdictions, where dementia is a protected characteristic under disability, and enshrined legal rights. See what I did there?



Fraga S, Lindert J, Barros H, Torres-González F, Ioannidi-Kapolou E, Melchiorre MG, Stankunas M, Soares JF. (2014) Elder abuse and socioeconomic inequalities: a multilevel study in 7 European countries. Prev Med,  Apr;61:42-7. doi: 10.1016/j.ypmed.2014.01.008. Epub 2014 Jan 15.

Prince M, Acosta D, Ferri CP, Guerra M, Huang Y, Llibre Rodriguez JJ, Salas A, Sosa AL, Williams JD, Dewey ME, Acosta I, Jotheeswaran AT, Liu Z. Dementia incidence and mortality in middle-income countries, and associations with indicators of cognitive reserve: a 10/66 Dementia Research Group population-based cohort study. Lancet. 2012 Jul 7;380(9836):50-8. doi: 10.1016/S0140-6736(12)60399-7. Epub 2012 May 23.

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