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.
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.