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My talk for BGS West Midlands (22 September 2016) on “Living well with dementia”

Thanks to the BGS West Mids group for a kind invitation to talk to them on the topic of ‘Living well with dementia’. I have not received a diagnosis of dementia which puts me at an disadvantage, but I will be giving a ‘big picture overview’ of some of the issues which are really hot topics now.

The full programme is here.

There’s been endless confusion about what ‘integration’ is. Like the word ‘Brexit’, it can conjure up a number of different possibilities, so ‘liking integration’ in itself can mean nothing.

Certainly, if you were to take out a blank sheet of paper, you wouldn’t want to start from here. The health and social care systems are worse than a complex maze, and even people with years of knowledge of the system can find themselves completely lost. The term ‘post diagnostic support’ for many takes on the demeanour of a limp lettuce, when it’s clear a lot more needs to be done to make this a meaningful reality.

In my talk for the regional BGS meeting next week, I’d like to take this representation as a starting point.


Karen Dening once suggested in a previous Dementia Congress that she saw care like making a cake – it wasn’t a case of simply having the right ingredients, but it mattered how much you had of each. Likewise, I feel that all elements I mention here are essential ingredients of any approach to dementia care, but how much you have of each is a fine art rather than a technocratic exercise.

  1. Rights.  Rights are not just legal ones, enshrined in statutory documents, but also are moral ones. Whatever one’s law in one’s jurisdiction, we should not tolerate wilful neglect or abuse of people ‘in care’, for example. And rights, which operate at the highest level whatever domestic arrangements, might mean that carers should accompany people with dementia in a hospital admission (right to private and family life), as in John’s Campaign. Or it could mean that persons with dementia who are incontinent should not be kept in soiled underclothing for days on end due to negligence (right to be free from degrading treatment). The question is of course how you make these rights ‘real’ for people, rather than an abstract exercise, and there’s been a lot of attention, some of it successful, in embedding a rights-based culture in provision of dementia care.

2. Interoperability. This term popularised recently by NHS England means that we could have shared systems for free flow of data in different care settings. Whilst there are concerns about confidentiality, the corollary, disclosure, can be seen as imperative for good care, where in real time there is a clear trail of encounters of any person with dementia with health and care services. If we believe in the notion that everyone is entitled to the best care whatever the setting, it is essential that we try to minimise barriers to information sharing between people involved in care, including with people with dementia themselves.

3. Health. A right to health is pervasive internationally from the World Health Organisation, and it’s often forgotten that health is an integral part of wellbeing. This means that people with dementia should not be languishing with unmet health needs in care homes, for example falls, fractures, infections. Some of it really is not rocket science – for example, a person with dementia whose hearing aid’s batteries are not replaced inevitably will face further obstacles to communication than need be. This entire approach means that no part of the person’s health and identity is left behind, and means attending to, if requested, enquiries about oral health, or sexual health, for example.

4. Interdependence and independence. No part of the system can function in isolation. We know that if one part of the system is weak, the rest is affected as in a ‘domino effect’. Only this week, for example, the King’s Fund and the Nuffield Trust presented their sobering report on social care in older people.

“The picture that emerges is of social care providers under pressure, struggling to retain staff, maintain quality and stay in business; local authorities making unenviable choices about where to make reductions; a complex set of causes of delays in discharging older people from hospital; and the voluntary sector keeping services going even when funding was curtailed.”

In any ‘care transaction’, despite the desire for reciprocity between the person providing the care and the person receiving the care, there can be, even with the best of intentions, a power imbalance. A bad situation to be in is being dependent on care, but likewise we need to acknowledge that none of us can function well on our own. And we can all learn from each other. Wouldn’t it be amazing if we can learn from palliative care and end of life care approaches from the hospice movement to improve care in other care settings, for example?

5. Enablement.

Take for example Newham Adult Social Care:

Enablement (sometimes called re-ablement or re-enablement gives adults the opportunity and confidence to relearn and regain some of the skills they may have lost because of poor health, disability or after a spell in hospital. Enablement is carried out at your home. by specially trained enablers for up to a 6 week period. Enablers will work with you to enable you to do these activities yourself. Equipment may be provided as part of the enablement service to promote independence. There is no charge for the service for 6 weeks.”

Shifting the framing of dementia as a medical ‘problem’ which needs a ‘cure’, to one where dementia is a disability producing handicap and impairments which can be addressed to improve people’s lives, has been a big step forward. The trend of de-institutionalisation to independence has been a welcome one if people feel they are genuinely supported. And there are excellent examples say of hospital at home or community nursing providing a preferred alternative. Because of parity of esteem, the focus can’t just be on physical health – the mental health needs of people with dementia (e.g. anxiety or depression) should be identified in a timely way, and like the improvement of physical health in dementia (e.g. stopping smoking, avoiding ‘bad’ cholesterol’), enablement can accompany mitigating against excess disability and decline in dementia.

6. Multi-morbidity

Dementia never travels alone. Whilst dementia is not simply a disease of ‘old people’, your risk of dementia increases with age, and as you get older the trend is for you to live with more than one condition. It’s not uncommon for people with dementia to be living simultaneously with four or five conditions. The world of drug trials ideally involves younger patients with minimal comorbidity with no pharmacy. The reality is of people living with several long term conditions, with many drugs interacting with one another in an unpredictable way.

7. Complexity

There is complexity everywhere you look in the system, ranging from complexity of medical and social care issues a person is presented with, to complexity of how the health and care systems are organised.

I think, at least, recognition of the relevance of ‘complex, adaptive systems’ is vital.

Sarah Fraser and Trisha Greenhalgh (2001):

  • Neither the system nor its external environment are, or ever will be, constant
  • Individuals within a system are independent and creative decision makers
  • Uncertainty and paradox are inherent within the system
  • Problems that cannot be solved can nevertheless be “moved forward”
  • Effective solutions can emerge from minimum specification
  • Small changes can have big effects
  • Behaviour exhibits patterns (that can be termed “attractors”)
  • Change is more easily adopted when it taps into attractor patterns

8. Person-centred care (PCC)

I don’t really want to go into a history of person-centred care in dementia here, but I think we’re very lucky in the field of dementia to have the rich legacy of the work of Prof Tom Kitwood. A person with dementia is at all times in continuity with his or her past, present and future (even though the event of diagnosis can be a significant life-changing one in itself). And a person with dementia is intimately connected to his or her own environment. Put bluntly, it’s impossible to provide ‘person-centred care’ (howeversodefined) if you don’t look after your own staff in a person-centred way (leading to burnout), if there’s rapid turnover of teams on a daily basis (for example due to rota gaps), patients in hospital physically move location (e.g. boarding to outlier wards), and so on.

9. Care planning

I think it would be nice if people don’t make dismissive comments of others involved in promoting health and wellbeing. The advice in fact couldn’t be clearer – that the person with dementia, carer and professional should all share in the development of care plans (see the RCN/Carers Trust “Triangle of care”). This projection of future care issues might be a good way to anticipate problems, such as in avoiding hospital admissions (say in ambulatory care sensitive conditions).

10. Wellbeing

Promoting wellbeing is s.1(1) Care Act (2014).

And the statutory provision is really helpful, actually, here.

Care Act

Again, it’s a question of ethos. It’s more fruitful, arguably, to consider ways of ‘promoting wellbeing’ rather than the rather clunky word ‘activities’. Activities can inadvertently sound task-oriented rather than person-oriented. Promoting wellbeing might be done in a number of wonderful ways, not just restricted to the infrastructure of health and social care buildings, such as arts and theatre, music, gardens/outdoor spaces and gardening, massage, yoga, for example. Widening access should be a policy goal, and possibly feasible through ‘social prescribing’.

Could all this as such herald the ‘end of the disease era‘?

“…The time has come to abandon disease as the primary focus of medical care. […] The changed spectrum of health conditions, the complex interplay of biological and non-biological factors, the raging population, and the inter-individual variability in health priorities render medical care that is centered primarily on the diagnosis and  treatment of individual diseases at best out-of-date and at worst harmful…”

(Tinetti ME, Fried T. The end of the disease era. Am J Med 2004;116:179–85, cited in Cesari et al., 2016).

Time will possibly tell.



Cesari M, Marzetti E, Thiem U, Pérez-Zepeda MU, Abellan Van Kan G, Landi F, Petrovic M, Cherubini A, Bernabei R. The geriatric management of frailty as paradigm of “The end of the disease era”. Eur J Intern Med. 2016 Jun;31:11-4. doi: 10.1016/j.ejim.2016.03.005. Epub 2016 Mar 18.

The slides

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  • Prof Peter Mittler

    A star blog, Shibley, should be on the desk all Commissioners and politicians.
    The only thing that’s missing is the UN Convention on the Rights of Persons with Disabilities to which the UK made a commitment in international law in 2009 and for which our government is being held to account next year. Disability Rights UK is one of the civil society organisations preparing a ‘parallel report’ which the CRPD Committee take very seriously.

    • wellbeingdem

      excellent point peter – many thanks.