blog (1)     

“I” or “We” statements for dementia. Are they making the weather?

weather

 

As one of the most important aspects of both policy and dementia care (and the two do overlap occasionally), a person is not to be determined solely in identity by the medical label of dementia. Speaking only medically, it is very unusual for someone to live only live with dementia – dementia rarely travels alone. And secondly, each person with dementia is an unique individual, with a present, past and future, identified in their ‘life stories’. Being an impartial independent academic physician, the “I statements” do not really impact upon my work. But they are of much peripheral interest to me, being on my RADAR or on my line of vision, given that I have a good overview of the current landscape of policy and dementia care both for here and internationally.

The National Dementia Declaration ‘I’ Statements are central to the work of the Dementia Action Alliance (DAA). They are the key principles of the DAA, around which all organisations agree to base their action plans. The idea was that the statements would encapsulate what someone with dementia could say about their life if they were properly supported, and that they would provide an ambitious and achievable vision for how society could support people with dementia.

I feel the statements are as broadly relevant now, as they were when originally proposed. It’s worth noting that a few Department of Health policy plans have emerged frequently since 2012, although there has been no revision of the original five year strategy for England since 2009’s “Living well with dementia”, co-authored by Prof Sube Banerjee who indeed wrote the main foreword to my recent book “Enhancing health and wellbeing in dementia: a person-centred integrated care approach” from Jessica Kingsley Publishers (January 2017).

Personalisation and co-production are important areas of policy development for England, and the contribution from Think Local Act Personal in the development of the ‘I statements’ methodology is formidable (see blogpost here).

The original National Dementia Declaration described seven outcomes that people living with dementia and their carers would like to see in their lives. They provide an ambitious and achievable vision of how they are supported by society. Click here to see a timeline of policy for the provision of dementia care in England.

The National Dementia Declaration is based on 7 ‘I Statements’:

  1. I have personal choice and control or influence over decisions about me.
  2. I know that services are designed around me and my needs.
  3. I have support that helps me live my life.
  4. I have the knowledge and know-how to get what I need.
  5. I live in an enabling and supportive environment where I feel valued and understood.
  6. I have a sense of belonging and of being a valued part of family, community and civic life.
  7. I know there is research going on which delivers a better life for me now and hope for the future.

I think it’s excellent that there has been active outreach for the views of individuals beyond a diagnosis of dementia concerning these statements. Some of these ‘focus groups’ have utilised the Toolkit for I Statements guiding direction of this work. An overview of the review of this work is provided here.

For what it’s worth, it is imperative that these statements are drafted and developed by individuals with dementia, but there is a debate to be had, hopefully a constructive one, about the extent to which these statements are owned only by people with dementia. These statements are essentially aspirational rather than legally enforceable, and there is a history of aspirations, e.g. the Citizen’s Charter in a previous government, which have not had much teeth in the real world. The advantage of a rights-based approach is that these can include rights which are enshrined in domestic or International legal instruments, for example the Human Rights Act or the United Nations Convention on Rights for People with Disabilities, but the power in these regulations is arguably not from the ability to take someone to court but an acknowledgement and appreciation that a rights-based consciousness can lead potentially to enforcement. Of course, if the mechanism for enforcing such rights in healthcare settings through the Care Quality Commission were more stringent, there might be more trust in regulatory mechanisms against neglect, abuse and mistreatment, for example.

From a purely policy and dementia care perspective, I feel that it is quite important that these statements don’t simply become a checklist for consumer rights, with the person with dementia or care partner merely seen as a paying consumer of services. I personally felt that ‘knowledge is power’, taking ownership about knowledge and know-how about dementia, is incredibly empowering. Every person has a right to good physical and mental health (and wellbeing is part of general health), so I think we all have a part a play here also in keeping people with dementia out of hospital through appropriate self-care and self management. The danger of implementing this in parallel with swathes of cutbacks to public services (even within the guise of sustainability and transformation plans from NHS England) is that personal health and care commissioning can be seen as a cover for cutting further the NHS and social care and more rampant rationing. This is why I feel more ‘choice and control’ is a weak idea unless proper resourcing of budgets exists, as financial poverty is a significant social determinant of health or inequality.

Likewise, I do believe being a valued part of family and community life is incredibly important, but the danger always for dementia friendly communities is that it has been viewed as a cost-neutral tick-box solution, acting to the commercial advantage of high street brands, rather than securing the local infrastructure in essential services such as specialist nurses. I feel that social connectedness, however, is most important for building up connectedness. I think having ‘services built around me’ can be hitting the target but missing the point; it sounds perfectly plausible that the solution might be a dementia adviser signposting to an ever decreasing range of services, but proper infrastructure necessitates a well funded system of social care professionals, district nurses or clinical specialist nurses who allow for continuity of care, training of the workforce, essential care and support for carers and their emotional wellbeing, and offering expertise in palliative care.

I think the length of the ‘I statements’ is fine, but my final concern is whether these statements would be better served by “We statements” in part. For example, collectively, it is motherhood and apple pie to ‘hold out hope’ for more research, but one person living beyond a diagnosis of dementia might prefer more research in better quality of care now rather than the potential for a distant (or more likely failed) cure by the deadline of eight years’ time in 2025. The views of people with dementia collectively are not the same as those of care partners, and indeed might vary significantly in certain areas. One example is non-invasive GPS monitoring of location; this might improve the wellbeing of a care partner and provide better security and safety arguably, but might be seen as an unacceptable invasion of privacy by a person with dementia. This is all to do with the juris sprudence of rights – that the rights of persons with dementia might be complementary to but not the same as those of care partners. We know the needs of people with dementia vary as the biology of the dementia changes, but it is worth noting that the needs of all of us, affected by dementia or not, is changing.

It is worth noting that it is simply impossible and unfeasible to ignore the care partner. Despite a direct duty of care of clinicians to people with dementia, care partners have a crucial role to play in maintaining the health, wellbeing and resilience in people with dementia, in various ways. These could be codified through care planning or case management (see the excellent work of Admiral nurses from Dementia UK), or through unofficial means (professional emotional building which defies metrics and commissioning). The care partner can be instrumental in the timing of a person seeking a diagnosis of dementia in the first place, can  be instrumental in ascertaining when a person with dementia no longer meets the three tests of the mental capacity legislation, or if a person with dementia is unable to live adequately at home and might benefit from a transfer to residential care. The care partner can be instrumental in communication of essential needs,  met and unmet, for both care partners and people with dementia.  So do we really mean “I statements” for only people with a diagnosis of dementia? I believe personalisation is not the same as personhood, although there are similarities. Respecting personhood for me, I hope in the tradition of many others more learned and eminent than me, is to respect the person in the context of his or her environment, and respecting aspects of identity such as sexuality or spirituality. And we need to know how people with dementia can flourish or thrive in the company of others. That’s why “I” doesn’t really mean “I”  but the person living a full life with others – look at Brooker and Latham (2016) on person-centred care. That’s at the heart of why I feel that independence is one side of a coin – the other side of the coin is interdependence.

Independence and interdependence, indeed, comprised a key theme of my book on integrated care noted above.

umbrella

A possible solution then might be to make ‘I statements’ generically intended for anyone ‘affected by dementia’, including a person with dementia or care partner alike. But not even the largest focus group will be able to obtain a list of definitive statements upon which all agree; this reflects the pay-off that often has to be achieved between achieving equality and diversity. And thought diversity is not only to be expected, but to be positively encouraged, arguably in people with dementia and care partners to maximise opportunities for the future and to build up resilience generally.

But I strongly agree with the methodology and the purpose of the “I statements”, and the mere process of engagement and empowerment of people living with dementia and care partners itself is a potentially beneficial one, irrespective of whether the statements indeed have any force. They certainly give some structure to policy aims, but for me it could be a case of the tail wagging the dog as most of the policy climate is there in the global literature and the ‘I statements’ merely are sampling the weather? The crunch question is whether the statements most benefit the person with dementia, the carer, the hosting organisation or none of the above?

Or is it that the ‘I statements’ are making the weather? Whatever, the Alzheimer’s Society and Dementia Action Alliance must be congratulated for an outstanding contribution to dementia, for this.

 

@dr_shibley

Share This: