blog (1)     

Congratulations to the Lewy Body Society!

I was honoured to attend the 10th year anniversary of the Lewy Body Society – it was the first time I had been to the Houses of Parliament since 1990 in fact, for the late Margaret Thatcher’s last ever #pmqs.

Lewy body dementia tends to have an age of onset in the 50s, and is therefore one of the more common young onset dementias. Prof Ian McKeith was one of the gurus in delineating this type of dementia, distinguished by features of Parkinson’s disease, cognitive problems of a fluctuating type, leg spasms, graphic visual hallucinations. Its molecular hallmark is a ‘synucleiopathy’.

Thanks very much to Conor McGinn MP, and Eimer and Patrick, whom I enjoyed talking to enormously. I am full of admiration for Conor who’d decided to take up the cause having been inspired by personal and professional connections to the condition. Conor is an enormously pleasant guy in real life.

I was honoured to chat with McKeith whose research has been known to me since I was a doctoral student in Cambridge 20 years ago now. McKeith felt that recent developments had seen merging of the dementia diagnoses, but reassured me that medics ‘love categories’. He was much younger than expected.

I was also nice to catch up briefly with Prof Murna Downs at Bradford, and Hilda Hayo CEO of @DementiaUK who felt that my final book on dementia had been the best book ever. I always am very impressed by Anna Gaughan’s sheer grit in furthering the interests of carers for people with dementia, a cause extremely close to my very own heart for personal reasons. I wish I could’ve spoken to Ken Clasper, another hero of mine, but it was great to see Jayne Goodrick and Chris Roberts there who have a special place in my life always.

I am sorry I had to leave slightly early to go back to my own Mum. I would’ve loved to speak to Steve Ford, who as CEO of Parkinson’s UK had funded my own post doctoral research into idiopathic Parkinson’s disease at the Institute of Neurology, Queen Square, London, just over ten years ago now.

16649321_10154978604793076_8960639354259461727_n16806652_10154978604983076_4666087659066259326_n16865058_10154978604993076_5088670561733002798_n16864552_10154978605078076_3340687037206164679_n

Share This:

     blog (1)     

A need to frame the narrative of ‘frailty’ more clearly?

At the time of writing, the newspapers are full of sentences blaming ‘old, frail people’ for getting ill and attending hospitals en masse.

Take for example the recent example of “a patient who was evicted from a hospital under a court order after spending more than two years in a bed has insisted that he did not want to stay there.”

The Guardian article (2017) continues:

Untitled-2

The most famous modern definition of health was created during a Preamble to the Constitution of the World Health Organization as adopted by the International Health Conference, New York, 19-22 June, 1946; signed on 22 July 1946 by representatives of 61 States (Official Records of the World Health Organization, no. 2, p. 100) and entered into force on 7 April 1948.

Health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.”

Indeed, this definition has not been amended since 1948.

In response to this, the Lancet opined (2009, p.781) that: “The obstacles to a minimum quantity of health seem so huge and so complex that it is almost impossible for a single doctor to have any influence on their effects.” The Lancet concluded instead that ‘health is an ability to adapt’, and may be that frailty simply represents poor health, or an inability to adapt.

Back in 2005, Rockwood argued on frailty:

Frailty is common and especially a focus for geriatricians, but there is no consensus on its definition beyond that it arises from many factors, and is a state of vulnerability. This paper proposes that a successful definition of frailty must also identify clinically recognisable degrees of frailty, be susceptible to animal modelling and demonstrate predictive validity as its highest standard of validation.” (p.432)

Clinical studies have shown that frailty can be quantified in a number of different ways. One clinical measure of frailty that has been used in many recent studies is known as a “frailty index” (FI), sometimes also referred to as a “deficit index”; a FI can be created by counting the accumulation of deficits in health, such as clinical signs, symptoms, diseases, laboratory and radiographic abnormalities (Parks et al., 2001). An alternative perspective is provided by the “Fried phenotypic definition of frailty”, developed by Fried and co-workers based on data from the Cardiovascular Health Survey (Fried et al., 2001). This proposes five items: weight loss, exhaustion, weakness, slow walking speed and low levels of physical activity. Experience from the dementia field has shown that, if one concentrates on deficits all the time, it is very difficult to convey the notion that ‘it is possible to live well with dementia’.

I feel that there needs to be now a coherent open discussion, including patients of all ages, as to what they think about the word ‘frailty’, if correctly applied to them. For example, some disabled people who use wheelchairs embarrassing and stigmatising (it is for example difficult to hail a cab in London if you’re sitting in a wheelchair); but others find their presence of a wheelchair profoundly empowering. The irony of seeking a definition of frailty is that it was supposed to provide objective criteria to help guide the identification of patients whose diverse needs needing tackling, when previously the rule of thumb had been “you recognise it when you see it”. In my experience, many people newly diagnosed with dementia report that people are surprised they do not look as if they have dementia. A person with severe muscle wasting might appear obviously frail, but frailty might not visibly obvious.

It is therefore, perhaps, worth going to the first paragraph of Goffman on stigma (1963) (p.1):

The Greeks, who were apparently strong on visual aids, originated the term stigma to refer to bodily signs designed to expose something unusual and bad about the moral status of the signifier. The signs were cut or burnt into the body and advertised that the bearer was a slave, a criminal, or a traitor — a blemished person, ritually polluted, to be avoided, especially in public places. Later, in Christian times, two layers of metaphor were added to the term: the first referred to bodily signs of holy grace that took the form of eruptive blossoms on the skin; the second, a medical allusion to this religious allusion, referred to bodily signs of physical disorder. Today the term is widely used in something like the original literal sense, but is applied more to the disgrace itself than to the bodily evidence of it.”

A failure to engage in this wider dialogue of what living with frailty means, I think, “risks confusion, alienation and a failure to connect with the very people who most stand to benefit from targeted services”(as correctly pointed out by Nicholson, Gordon and Tinker, 2016).

Luna Dolezal (2015) recently expanded on the insights of Aaron Lazare’s 1987 article ‘Shame and Humiliation in the Medical Encounter’ where it is argued that patients ‘often see their diseases and ailments as defects, inadequacies or personal shortcomings’. Donezal continues, ‘that visits to doctors and medical professionals involve potentially humiliating physical and psychological exposure.’ This is a perceptive observation, as a clinician labelling someone as ‘frail’ and then not offering anything to help, might be seen of little benefit, other than doshing up stigma in large quantities. Strikingly, Dolezal concluded that ‘shame can be exacerbated or even incited by physicians through judgment and as a result of the power imbalance inherent to the physician-patient dynamic, compounded by the contemporary tendency to moralise about ‘lifestyle’ illnesses.’ And therein possibly lies the greatest danger of offering the diagnosis of frailty; the subconscious feeling that the diagnostic label might be of more benefit to commissioners planning services, exercising power over patients, than patients themselves.

But arguably, on a positive note, we have come a some way already. Gillick defined frail elderly people as “old debilitated individuals who cannot survive without substantial help from others,” emphasising the social consequences of frailty (Gillick, 1989).

I feel stigma and frailty do deserve discussion, although a MEDLINE search for “frailty” and “stigma” will only elicit four results. Stigma is a process that has been conceptualised as being initiated by the identification and labelling of difference that links to a stereotype with negative characteristics and the labelling that distinguishes a ‘them and us’ separation (see Gray, 2002; Link and Phelan, 2001, 2006). However, that the relationship between stigma and frailty is extremely under-researched does not mean that the issue is not significant. It might be that the NHS actively tries to case-find people who are frail, but there are genuine ethical issues here. Anyway, research on help-seeking behaviour in a totally different context, that of young people’s mental illness, has paid particular attention to the confidentiality of healthcare, young people’s knowledge about services, and how accessible they are, but such factors do not fully explain the very low rates of consultation among young people who are mentally unwell (Zwaanswijk et al., 2003). Recent published work has indicated help-seeking by mentally unwell young people may be improved by interventions that address both their lack of factual information about mental illness, and those which reduce their strong negative emotional reactions towards people with mental illness (Rose et al., 2007). This merits a coherent analysis of how much people of a certain age understand by the word ‘frail’, if frailty awareness is poor, a decision has to be made as to whether as a society we need to invest in some kind of frailty awareness.

A genuine question persists as to whether patients who are deemed a frail share much in common. As Rockwood (2002) points out, “criterion validity” exists when a new definition or test correctly classifies people according to a referent outcome, In the case of frailty, Rockwood concludes is strongly linked with vulnerability, so one means of testing the criterion validity of a definition of frailty would be to assess its ability to predict adverse outcomes, such as prolonged hospital stays, or falls. So, from a clinical perspective, the diagnostic label is useful. On the other hand, the now classic “Frailty: Language and Perceptions” report prepared by BritainThinks on behalf of Age UK and the British Geriatrics Society June 2015 report found that older people they spoke to did not identify with the term ‘frail’. Indeed, the report explicitly states on p.10 that: “Older people consulted in this research have a strong aversion to the term frail’; it is not part of their vocabulary when they talk about themselves and their lives… This aversion seems to be driven by synonymous associations between ‘frailty’ and very severe physical (and mental) limitations.” The report continues (p.11): “These strong negative associations meant that the word ‘frailty’ was understood to mean an irreversible state that some older people enter into in the very final stages of their lives.”

Of course, not all people with mild forms of frailty progress to a state of severe disability. That is precisely why we need to have a discussion of ways to make people less susceptible to ‘shocks’, for example nutritional manipulations for brain health, particularly as pre-rehabilitation pre general surgery to avoid delirium, or medication to build up bone strength to mitigate against osteoporosis and severe fractures.  The BGS/Age UK report is not an isolated finding. A recent qualitative study of 29 older people aged 66–98 years found that ‘most participants actively resented the identity’, even those whocould be classified as frail using objective criteria (Warmoth et al., 2016). The authors report from verbatim transcripts that people labelled by others as ‘old and frail’ contributed to the development of a frailty id entity by encouraging confirmation of it, including a loss of interest in participating in social and physical activities, poor physical health and increased stigmatisation.

In clinical lingo, labelling is an inevitable part of the diagnostic procedure (see ‘labelling theory’ described by Becker (1963)). Diagnosis is often dependent on the proposed or actual disposition of the case and becomes more accurate when treatment procedures are available and tested. This is indeed true for clinical frailty, but sociologically labelling might have some negative connotations. In that sense labelling means the attachment of a deviant tag or status to an individual whose behaviour does not appear normal to the identifier of the problem (Rowitz, 1981).  From the mental illness literature, where receiving a label has been investigated extensively, it appears that there are mixed reactions to receiving a diagnosis. Warner and colleagues (1989) have revealed that ‘label acceptors’ manifested better overall functioning than ‘label rejecters’.  Alternatively, individuals may resist stigma and have a strong sense of group identity and empowerment (Watson et al., 2007).

Vellenga and Christenson (1994) in their research have emphasised the extent of the turmoil clients have in apprehending their diagnosis and their need to cope with the deep losses evoked by it, in order to feel more reconciled with it. On the other hand, studies also show people who are out with their mental illness experience less self-stigma and great quality of life (Corrigan et al., 2010). In this light, advocates believe that strategic disclosure might be taught to people to manage self- stigma (Corrigan et al., 2013). The persistent effects of stigmatisation have also been previously reported. For instance, in a longitudinal study of men with mental illness, Link and colleagues (1997) found that the pervasive effects of stigma remained apparently unaffected by treatment benefits despite of major improvements on symptoms and functioning described by the participants’ one-year after entering into treatment.

The ideal for someone who has been newly diagnosed by a clinician as being frail is to be offered some mechanism of having your ‘health assets’ improved so that you are in a better state of wellbeing, able to withstand slippage into a state of illbeing.

A health asset is defined thus.

A health asset is any factor or resource which enhances the ability of individuals, communities and populations to maintain and sustain health and wellbeing and to help to reduce health inequalities. These assets can operate at the level of the individual, family or community and population as protective and promoting factors to buffer against life’s stresses” (Morgan and Ziglio, 2007; p.18).

Assets can therefore be described as the collective resources which individuals and communities have at their disposal, which protect against negative health outcomes and promote health status. These assets can be social, financial, physical, environmental, or human resources, for example employment, education, and supportive social networks (Harrison et al., 2004). Although assets can include material resources – land, buildings and income in public health, more typically, the primary focus is on valuing individual and collective psycho-social attributes, including self-esteem, confidence, “intangible assets” such as knowledge, skills, wisdom and culture, and key features of social capital: social networks and reciprocity, mutual aid (Friedl, 2012). There is currently a growing interest in the UK in asset-based approaches that identify and mobilise the assets of individuals, communities and organisations to enhance individual and community capabilities and address health inequalities (Public Health England and NHS England, 2015).  Recent legislation, viz the Care Act 2014, requires local authorities to ‘consider the person’s own strengths and capabilities, and what support might be available from their wider support network or within the community to help’ in considering ‘what else other or alongside the provision of care and support might assist the person in meeting the outcomes they want to achieve’ (SCIE, 2015).

Salutogenesis is the underpinning theory, that is understanding how positive health is created and how people stay well even when faced with stressful events or adverse circumstances (Lindström and Eriksson, 2005). It is very surprising that there has been little discussion of frailty, which is intimately defined through the poor response to stress, through the assets prism. A recent review indicated that individual health assets are associated with improved outcomes of functional decline, mortality, new need for residential care and readmission in hospitalised older adults (Gregorevic et al., 2016). The importance of assets, however, has been previously very clearly recognised in the literature. Rockwood and colleagues (1994) have perceptively captured the essence of frailty, and added the important controlling principle of precarious balance easily perturbed. When assets clearly outweigh deficits, the patient is not frail and in the absence of serious acute illness would be expected to live independently in the community. Conversely, where deficits clearly outweigh assets then the patient is more likely to be in institutional long-term care or, at least, require substantial community long-term care.

frailty pic

 

Fig 1. Assets v deficits, redrawn from Rockwood et al., 1994.

 

The comprehensive geriatric assessment, pivotal in the management of frailty, is in an unique position to assess both assets and deficits. CGA is defined as a multidimensional, interdisciplinary diagnostic process focused on determining the medical, psychological, and functional capabilities of a frail elderly person to develop a coordinated and integrated plan for treatment and long-term follow-up (e.g. Rubenstein et al., 1991). The jewel in the assets vs. deficits crown, not just viewing frailty through a deficits or phenotype lens, is that it enables the clinician to build up a picture of individual resilience. Individual resilience, the capacity to do well in the face of adversity, is promoted by long-term relationships in the family, neighbourhood and schools, alongside secure parenting, educational progress, satisfying work and support for self-esteem (Rippon and Hopkins, 2015).

The concept of resilience, the tendency to remain well or “bounce back” in the face of adversity, is not new (Jain et al., 2014). In recent decades, a robust literature has framed resilience as a psychological construct, referring to adaptive attitudes and behaviours that allow one to remain psychologically sound, or even thrive, after being exposed to stressful life events (Whitson et al., 2016).  Due to the nature of stigma, it is unlikely that patients or service users will bring it directly to the attention of professionals (Howe, Tickle and Brown, 2014).  Therefore, arguably, professionals should specifically ask about experiences of stigma, the extent of social networks, self-image and ‘new’ identity post-diagnosis (Byrne, 2000). I feel that it is also important to not lose sight of an assets perspective on frailty. Allowing people to view themselves as ‘taking back control of their frailty’ through such a perspective might mitigate successfully against stigma, poor self-confidence and poor self-management. Frailty can lead to disability, but not always – and even then, control is still fundamental to living with disability. Disability is a situation, caused by social conditions, which requires for its elimination that disabled people should, with the advice and help of others, assume control over their own lives, and that professionals, experts and others who seek to help must be committed to promoting such control by disabled people (Campbell, 2002).

 

References

Age UK/British Geriatrics Society. Frailty: Language and Perceptions – A report prepared by BritainThinks on behalf of Age UK and the British Geriatrics Society (June 2015), http://www.ageuk.org.uk/Documents/EN-GB/For-professionals/Policy/health-and-wellbeing/report_bgs_frailty_language_and_perceptions.pdf?dtrk=true.

Becker HS. Outsiders: Studies in the Sociology of Deviance. New York, The Free Press 1963.

Byrne P. Stigma of mental illness and ways of diminishing it. Adv Psychiatr Treat 2000; 6: 65 72.

Campbell, J. (2002) Valuing Diversity: The disability agenda: we’ve only just begun, Disability & Society, 17:4, 471-478, DOI: 10.1080/09687590220140386

Corrigan, P.W., Morris, S., Larson, J., Rafacz, J., Wassel, A., Michaels, P., Wilkniss, S., Batia, K., Rüsch, N., 2010. Self-stigma and coming out about one’s mental illness. J. Commun. Psychol. 38 (3), 259–275. http://dx.doi.org/10.1002/jcop.20363.

Corrigan, P.W., Sokol, K., Rüsch, N., 2013. The impact of self-stigma and mutual help programs on the quality of life of people with serious mental illnesses. Commun. Mental Health J. 49 (1), 1–6. http://dx.doi.org/10.1007/ s10597-011-9445-2.

Dolezal L. The phenomenology of shame in the clinical encounter. Med Health Care Philos. 2015 Nov;18(4):567-76. doi: 10.1007/s11019-015-9654-5.

Fried, L., Tangen, C.M.,Walston, J., et al., 2001. Frailty in older adults: evidence for a phenotype. J. Gerontol. A Biol. Sci. Med. Sci. 56, M146–M156.

Friedli, L (2012): ‘What we’ve tried, hasn’t worked’: the politics of assets-based public health, Critical Public Health, DOI:10.1080/09581596.2012.748882

Gillick MR: Long-term care options for the frail elderly. J Am Geriatr Soc 1989; 37: 1198-1203

Goffman, E. (1963) Stigma. Stigma: Notes on the Management of Spoiled Identity, London: Penguin.

Gray AJ (2002) Stigma in psychiatry. Journal of the Royal Society of Medicine 95: 72–76.

Gregorevic KJ, Lim WK, Peel NM, Martin RS, Hubbard RE. Are health assets associated with improved outcomes for hospitalised older adults? A systematic review. Arch Gerontol Geriatr. 2016 Nov-Dec;67:14-20. doi: 10.1016/j.archger.2016.06.016. Epub 2016 Jun 21.

Harrison D, Ziglio E, Levin L, Morgan A. Assets for health and development: Developing a conceptual framework. European Office for Investment for Health and Development, Venice, World Health Organisation; 2004.

Howe L, Tickle A, Brown I. ‘Schizophrenia is a dirty word’: service users’ experiences of receiving a diagnosis of schizophrenia. Psychiatr Bull (2014). 2014 Aug;38(4):154-8. doi: 10.1192/pb.bp.113.045179.

Jain S, Sprengel M, Berry K, Ives J, Jonas W. 2014. The tapestry of resilience: an emerging picture. Interface Focus. 4: 20140057. http://dx.doi.org/10.1098/rsfs.2014.0057

Lazare, A. 1987. Shame and humiliation in the medical encounter. Archives of Internal Medicine 147: 1653–1658.

Lindström B, Eriksson M. Salutogenesis. Journal of Epidemiology and Community Health. 2005;59(6):440-2.

Link BG, Phelan JC (2001) Conceptualizing stigma. Annual Review of Sociology 27:  363-385.

Link BG, Phelan JC (2006) Stigma and its public health implications. The Lancet 367: 528 529.

Link, B.G., Elmer, L., Struening, E., Rahav, M., Phelan, J.C., Nuttbrock, L., 1997. Oncstigma and its consequences: evidence from a longitudinal study of men with a dual diagnosis of mental illness and substance abuse. J. Health Soc. Behav. 38, 177–190.

McLean, J. 2011. Asset Based Approaches to Health Improvement: Redressing the Balance. Briefing Paper 9 Glasgow: Glasgow Centre for Population Health. http://www.gcph.co.uk/assets/0000/2627/GCPH_Briefing_Paper_CS9web.pdf

Morgan A, Ziglio E. Revitalising the evidence base for public health: an assets model. Promotion and Education 2007;14:17.

Nicholson C, Gordon AL, Tinker A3. Changing the way “we” view and talk about frailty…. Age  Ageing. 2016 Dec 7. [Epub ahead of print]

Parks RJ, Fares E, Macdonald JK, Ernst MC, Sinal CJ, Rockwood K, Howlett SE. A procedure for creating a frailty index based on deficit accumulation in aging mice. J Gerontol A Biol Sci Med Sci. 2012 Mar;67(3):217-27. doi: 10.1093/gerona/glr193. Epub 2011 Oct 21.

Powell, C. Frailty: help or hindrance? R Soc Med. 1997; 90(Suppl 32): 23–26. PMCID: PMC1296073.

Public Health England/NHS England (2015) A guide to community-centred approaches for health and wellbeing, full report, https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/417515/A_guide_to_community-centred_approaches_for_health_and_wellbeing__full_report_.pdf.

Rippon, S, Hopkins, T. (2015) Head, hands and heart: asset-based approaches in health care A review of the conceptual evidence and case studies of asset-based approaches in health, care and wellbeing.

Rockwood K, Fox RA, Stolee P, Robertson D, Beattie L. Frailty in elderly people: an evolving concept. Can Med Assoc J 1994;150:489-95

Rockwood K. What would make a definition of frailty successful? Age Ageing. 2005 Sep;34(5):432-4.

Rose D, Thornicroft G, Pinfold V, Kassam A. 250 labels used to stigmatise people with mental illness. BMC Health Serv Res. 2007 Jun 28;7:97.

Rowitz L. A sociological perspective on labelling in mental retardation. Mental Retardation April, 1981; 47-51.

Rubenstein LZ, Stuck AE, Siu AL, Wieland D. Impacts of geriatric evaluation and management programs on defined outcomes: Overview of the evidence. J Am Geriatr Soc 1991;39:8Se16S.

SCIE (2015) Strengths-based approaches for assessment and eligibility under the Care Act 2014 http://www.scie.org.uk/prevention/research-practice/getdetailedresultbyid?id=a11G000000A1vY9IAJ

Vellenga B.A., Christenson J. (1994) Persistent and severely mentally ill clients’ perceptions of their mental illness. Issues in Mental Health Nursing 15, 359–371.

Warmoth, K, Lang, IA, Phoenix, C, Abraham, C. ‘Thinking you’re old and frail’: a qualitative study of frailty in older adults, Ageing and Society, Volume 36, Issue 7 August 2016, pp. 1483 1500.

Warner R., Taylor D., Powers M. & Hyman J. (1989) Acceptance of the mental illness label by psychotic patients: effects on functioning. American Journal of Orthopsychiatry 59, 398–409.

Watson AC, Corrigan P, Larson JE, Sells M. Self-stigma in people with mental illness. Schizophr Bull 2007; 33: 1312-8.

Whitson HE, Duan-Porter W, Schmader KE, Morey MC, Cohen HJ, Colón-Emeric CS. Physical Resilience in Older Adults: Systematic Review and Development of an Emerging Construct. J Gerontol A Biol Sci Med Sci. 2016 Apr;71(4):489-95. doi: 10.1093/gerona/glv202. Epub 2015 Dec 29.

Zwaanswijk M, van der EJ, Verhaak PF, Bensing JM, Verhulst FC: Factors associated with adolescent mental health service need and utilization. J Am Acad Child Adolesc Psychiatry 2003, 42:692-700.

 

@dr_shibley

 

 

 

Share This:

     blog (1)     

The right to health in dementia care needs prioritisation of rehabilitation

Since 1946, the right to health has been recognised as a fundamental human right in legal instruments and national constitutions, creating entitlements in relation to accessible and adequate health care and the underlying social determinants of health.

When a person with dementia is physically restrained causing bruises to appear, article 3 gets engaged, to be free from degrading treatment. Therefore, quality in care rights converge on dignity rights, and in turn human rights.

Jennifer Gibson and colleagues note that:

“Although dignity is commonly referenced in international human rights instruments, the term is neither conceptualized nor explicitly translated into specific rights, including health.”

I mention dignity in the final chapter of my last book on dementia “Enhancing health and wellbeing in dementia: a person-centred integrated care approach” from Jessica Kingsley Publishers.

But arguably, any international consensus on the human right needs to take due account of domestic circumstances. For example, Joanna Erdman has advanced the view that “both bioethics and human rights approaches to the right to health must necessarily be attentive to lived experience, institutional culture, and structural injustice.”

The drive to embolden an international “right to health” comes at a particularly sensitive time.

For example, Gostin and Friedman (2017) write in the Lancet:

“To create the foundation for these transformative changes, the Director-General will need to focus first on gaining political support. This entails improving accountability and transparency to gain member state trust, and enabling meaningful civil society participation in WHO’s governance and standing up for the right to health to gain civil society support. Ultimately, in the face of a global environment marked by heightened nationalism and xenophobia, member states must empower the next Director-General to enable WHO to be a bulwark for health and human rights, serving as an inspiring contra-example to today’s destructive politics, demonstrating that the community of nations are indeed stronger together.”

The UK as a whole voted #Brexit in 2016, to leave the European Union (EU), although it is worth noting that Scotland, with a strong human rights record in dementia policy, voted for staying in the EU. The UK Government, although not explicitly stating it in law, re-confirmed yesterday its current view of wishing to retain membership of the European Convention of Human Rights. This is highly relevant, as citizens of the EU can still petition Strasbourg on human rights, irrespective of whether the Human Rights Act 1999 becomes latterly repealed or not.

A pivotal change in perspective has been to acknowledge dementia as a disability. This is defined under the Equality Act (2010), and strongly conveyed in the drafting of the United Nations Convention on the Rights of Persons with Disabilities. Instead of putting all one’s eggs in one basket, vis-à-vis a “cure for dementia” by 2025, an aspirational and yet completely unenforceable claim, people currently with dementia can be offered active rehabilitation and be entitled legally to adjustments to make their lives better.

The World Health Organisation met earlier this week to launch their Global Action Plan on rehabilitation (“#Rehabilitation2030“).

As they stated,

“Rehabilitation is a set of interventions designed to optimize functioning and reduce disability in individuals with health conditions in interaction with their environment.”

Rehabilitation is a highly person-centred health strategy; treatment caters to the underlying health condition(s) as well as goals and preferences of the user.

The WHO Framework on Integrated People-centred Care is relevant here.

I feel very much this approach is needed to tackle the needs of people with dementia and care partners, bearing in mind especially the ‘complexity’ and ‘comorbidity’ which I identified as pervasive strands early on in my book.

This WHO framework provides:

“Longer lifespans and the growing burden of chronic conditions requiring complex interventions over many years are also changing the demands on health systems. Integrated people-centred health services means putting the needs of people and communities, not diseases, at the centre of health systems, and empowering people to take charge of their own health.”

Rehabilitation responds to individuals’ needs and priorities, and targets limitations in functioning of a person in relation to his environement: this is the very essence of person-centredness.

The progress of England towards integrated care has been troubled in recent years, ranging from the positivity of the Barker Commission to the problems identified in the NAO report yesterday, but countries on the whole are indeed moving towards integrated person-centred care, and it is thus imperative that quality rehabilitation is embedded in service delivery models.

In the WHO meeting earlier this week, it is discussed that, excluding acute and remitting conditions, and conditions associated with mild disability, 74% of years lived with disability (YLDs) in the world are the result of health conditions for which rehabilitation may be beneficial. But now that YLDs to compare different disabilities, despite the clear methodological (and definitional) concerns, it seems only reasonable that greater scrutiny goes into the ‘meaning’ of YLD in dementia.

YLDs

As such, the availability of accessible and affordable rehabilitation plays a fundamental role in achieving Sustainable Development Goal (SDG) 3, “Ensure healthy lives and promote well-being for all at all ages”. Rehabilitation is an essential part of the continuum of care, along with prevention, promotion, treatment and palliation, and should therefore be considered an essential component of integrated health services. In other words, rehabilitation is important for all components of the integrated care pathway I discussed in my new book.

The benefits of rehabilitation are realised beyond the health sector. Rehabilitation can reduce care costs and enable participation in education and gainful employment. This is of interest to, but not confined to, individuals who have an onset of dementia in younger ages. It is highly relevant to participation of people with dementia and care partners in accessible, inclusive ‘dementia-friendly’ communities or societies.

Rehabilitation may be needed by anyone with a health condition who experiences some form of limitation in functioning, such as in mobility, vision or cognition. Rehabilitation is characterised by interventions that address impairments, activity limitations and participation restrictions, as well as personal and environmental factors (including technology) that have an impact on functioning.

It is noteworthy that the World Health Organisation recommends that, in order to be compliant with the Convention on the Rights of Persons with Disabilities, Member States should ensure that rehabilitation services are accessible to persons with disabilities. The UK currently has a dreadful ‘record sheet’ with the United Nations on disability, so the way in which the UK governments treats people with dementia and carers under this lens is of particular interest. This may involve modifying the physical environment where services are provided, or making rehabilitation information accessible in different formats. The emphasis of ‘dementia friendly communities’ will therefore have to change from the competitive advantage of businesses to a greater involvement with the health nd social care parts of society. For older populations, rehabilitation has been shown to increase safety and independence, reduce the risk of falling, and decrease hospital and nursing home admissions. Given the current serious problems in the NHS and social care, this is of huge importance in ensuring that the quality of life of people with dementia and carers are not actively impaired by their involvement with the health and social care systems.

Rehabilitation has long been recognised as a core component of Primary Health Care since the Alma Ata Declaration in 1978, yet its representation in primary care is relatively poor. Although there is no universally agreed or recommended minimal number of physiotherapists, physical and rehabilitation medicine doctors, or speech and language therapists, the critical shortage of these professionals is evident, especially in low- and middle-income countries. I have long argued the need to embrace diverse members  of the allied health professional community, for example speech and language therapists in managing the complex language disorders which can accompany dementia, or advising difficulties in eating well or swallowing.

Current barriers to strengthen and extend rehabilitation in countries, identified by WHO in their “Call to Action”, include:

i. under-prioritisation by government amongst competing priorities;
ii. absence of rehabilitation policies and planning at the national and sub-national levels;
iii. where both ministries of health and social affairs are involved in rehabilitation there is limited coordination between them;
iv. non-existent or inadequate funding;
v. a dearth of evidence of met and unmet rehabilitation needs;
vi. insufficient numbers and skills of rehabilitation professionals;
vii. absence of rehabilitation facilities and equipment; and
viii. the lack of integration into health systems.

A critical thing to remember is that rehabilitation is relevant in all care settings, including at home, in hospitals, hospices or residential homes, and promotes a right to health. All these factors would all have to be put into the melting point of a renewed English dementia strategy, if we had one. The only English dementia strategy to date was 2009-2014. As it is, one can only hope that with the excellent ‘engagement and empowerment’ being done by Kate Swaffer and the Dementia Alliance International working with Alzheimer’s Disease International, directly with the World Health Organisation, England might somehow ‘catch a cold’ policy-wise.

Share This:

     blog (1)     

Enhancing health and wellbeing in dementia. Book launch in the Arlington Centre, Camden.

When all is said and done, I am not a big fan of the social care and NHS services being run down, with the reassurance that if you did deep into your pockets and promote a certain type of research into dementia there might possibly be a cure for dementia by 2025.

I’d like to thank @MrTopple, Steve Topple, for this outstanding article in “the Canary” explaining my motivation behind writing a trilogy of books on dementia.

The third, and final book, I felt built on my two previous books on dementia in providing an overview of what the overall care pathway might look like. The book was published by Jessica Kingsley Publishers on 19 January 2017, and is entitled “Enhancing health and wellbeing in dementia: a person-centred integrated care approach.”

Thanks enormously to my publishers, Jessica Kingsley Publishers, for great support in providing a selection of dementia books including mine for the afternoon.

The book follows the following ‘planks’.

Six themes

Thanks very much to the Arlington Centre, Camden, for hosting this third book launch. I was pleased we had a great mix of around fifty people there, including Prof Dawn Brooker who has written extensively on person-centred care in dementia.

Kate Swaffer led the discussion at the end of the programme of talks, in response to the topics covered.

Photos of the event

failure in person centred care

haha

Lisa and Dig Dog

ripal 2

Nicky Ripaljeet

Gina2

Gina 1

Jo

wellbeing

Yvonne and Jo

Another Reinhard

Lisa Kate and Marian

what goes look like

Lucy cost 0

Sarah

Kate and Lisa

Kate

Reinhard and Hilary

Angela and Hazel

M S robot

shibley signing

Disc

Reinhard

Terrific afternoon

andy tysoe

shirley

some books

group

hilary alan jo

maneesh

more books

andy and ripaljeet

andy rebecca

rebecca

ripaljeet

ripaljeet andy

suzie and kate

Presentations

Enhancing health and wellbeing in dementia

Enhancing health and wellbeing in dementia from Shibley Rahman on Vimeo.

Discussion extract (chaired by Kate Swaffer)

Promoting wellbeing in care homes: Yvonne Manson and Joe Walker, Balhouise Care

Preventing excess disability in dementia through psychological therapies, Reinhard Guss

Living alone with dementia, Jo Moriarty

Person-centred care in acute hospitals: a clinical specialist nurse’s view. Lucy Frost

Supporting well in dementia care in the future, talk by Maneesh Juneja

Share This: