Community based rehabilitation provides the vision in dementia care where weak words do not

The term “challenging behaviours” was a very unfortunate import from the field of intellectual disabilities to dementia, necessitating the query “for whom behaviours are ‘challenging’?” Many people with dementia find behaviours of the medical profession ‘challenging’, being polite.

But a ‘good import’, arguably, would be the notion of “Portage”.

The name Portage comes from the town of Wisconsin, USA where the a home teaching scheme was developed in the 1970’s.

Portage is a home visiting educational service for pre-school children with additional needs. These may be learning difficulties, developmental delay or physical difficulties.

The “Portage Home Visitor” works with parents in their home because young children initially learn best in the security of their own environment, with the people who know them. In this way the best teaching programmes can be developed for every child.

Interesting ‘success stories’ exist elsewhere in the world too.

Founded in the Netherlands in 2006/07, Buurtzorg is a unique district nursing system which has garnered international acclaim for being entirely nurse-led and cost effective.

Prior to Buurtzorg, home care services in the Netherlands were fragmented with patients being cared for by multiple practitioners and providers.

Ongoing financial pressures within the health sector have led to home care providers cutting costs by employing a low-paid and poorly skilled workforce who were unable to properly care for patients with co-morbidities, leading to a decline in patient health and satisfaction. This is a problem which England shares too.

Indeed, a recent report last week from the International Longevity Centre discussed again the significance of co-morbidities in dementia Buurtzorg’s solution has to give its community district nurses far greater control over patient care – a factor which it attributes as key for its rapid growth.

There is huge interest as to whether ‘the Buurtzog model’ can be adapted for the English system.

Until recently, neither persons with dementia nor national dementia societies had used their right of access to UN Convention on Rights for People with Disabilities to which they are legally entitled defined by the scope of Article 1.

“Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.”

Prof Peter Mittler CBE, Advisor for Human Rights for Dementia Alliance International, writes:

“At the recent WHO Ministerial Conference on Dementia, Kate Swaffer [Chair of Dementia Alliance International] set the ball rolling at the opening session by including ‘Access to CRPD’ as one of DAI’s demands.”

In addition, a robust, human-rights based resolution submitted by Alzheimers Disease International on behalf of 38 national Alzheimers Associations was reflected in the first of the General Principles of the Call for Action by WHO Director Dr Margaret Wang.

It was remarked that an aspiration should be that “policies, plans, programmes, interventions and actions are sensitive to the needs, expectations and human rights of people living with dementia and their caregivers“.

The concept of ‘post-diagnostic support’ (soothing, but in reality weak words for England’s policy in dementia) needs to be re-configured as a rehabilitation pathway.

Essential to the re-framing of the whole discussion is getting rid of the idea that ‘post diagnostic support’ is a haphazard AFTER THOUGHT – and that the medical model is KING through the strategic placement of ‘diagnosis’. Sure, without the diagnosis, nothing further can happen, but the issue is that even with the diagnosis some people are experiencing next to nothing in care in England, and even if they experience some care it is fragmented and disjointed.

There is no better introduction into how the sequelae of the dementia diagnosis can be so positively destructive than Kate Swaffer’s own description of ‘prescribed disengagement™’ in a prominent journal here.

This pathway begins possibly even at the time of contemplation of the diagnosis with extensive support to after when the diagnosis has been given. At all times, the recipients of that diagnosis (including immediate closest) should be opportunities to ask questions and discuss ways in which care and/or support can be given.

Enablement should be the goal now.

Other jurisdictions, for example Queensland in Australia, have been outstanding in leading – see this report, for example, here.

Recent, rather limp words recently even seemed to miss out ‘caring well’ altogether – making English policy on this close a bit strange to put it mildly.

A ‘pathway’ is a somewhat cranky technocratic word, and could be considered entirely inappropriate in the context of an English government intent on cutting state provision of a ‘safety net’. But at best it might provide decision points which might be legitimately and reasonably expected at points in a personal integrated care and support plan following diagnosis.

The lack of national adoption of pathways, entirely due to entirely political reasons, and despite a plethora of evidence to prove pathways can promote health and wellbeing for patients with dementia and carers, has been noteworthy here in England, tragically.

Notwithstanding, a rehabilitation pathway would provide access to a wide range of specialists. These might include, for example, the following personnel, no one part of the ‘workforce’ being “more important” than others, promoting independence as part of an inclusive, accessible community for all.

People with dementia and those closest to them themselves have an important rôle to ply in co-designing pathways in genuine co-production, if they are working on an equal and reciprocal basis.

Specialist clinical nurses who can act from the point of diagnosis providing continuity of care are important are sufficient in themselves. They are especially helpful in applying palliative care principles. For too long, it has been dismissed that dementia is a terminal condition, thus denying many people with dementia equitable access to palliative approaches.  Furthermore, it has been insufficiently addressed that people with dementia have a right to the highest standards of health from the NHS, regardless of setting.

These trained clinical nursing specialists are also extremely well placed to sort out issues arising from co-morbidities in health and illness, helping to head off avoidable acute admissions to hospital, or premature inappropriate transfer to residential care. Admiral nurses are also pivotal in helping coping strategies, essential in averting ‘crises’ in dementia care.

Other specialists might include:

  • Occupational therapists are pivotal, I feel; this rôle could include wider implications of he diagnosis and a discussion possible adaptations to the home and domestic appliances, and various forms of technology and innovations. A particular challenge, for example, might be to negotiate higher order problems in processing of the senses, including vision, as per posterior cortical atrophy.
  • Physiotherapists to maintain mobility and promote physical exercise.
  • Speech and language therapists to promote language and communication, especially important in Alzheimer’s disease and temporal forms of frontotemporal dementia, as well as to ensure safe swallowing following particular vascular events.
  • Clinical neuropsychologists to advise on adjustment to diagnosis, improving and maintaining cognitive functioning, promoting thought diversity and an ‘assets based approach’ where people’s skills can be best utilised.
  • Dieticians: a healthy diet is relevant in the progression of dementia, and especially so arguably for vascular dementia and Alzheimer’s disease. Also, latterly, particular attention has been given to optimising eating environments as part of the ‘healthy eating’ ethos.
  • Social workers are much utilised in my opinion, and I should like to see a much wider rôle than in safeguarding or crises, though I think capacity building in the workforce of social workers with a specialist interest in mental health issues might be helpful. I think social work practitioners are vital in the promotion of wellbeing, in enabling and protecting people with dementia, and provide access to community resources perhaps including personal budgets for some,
  • Pharmacists. Many medications can worsen cognitive symptoms potentially and act as risk to physical health indeed, and inappropriate polypharmacy needs to be reviewed by specialists in pharmacy.

Certainly medical professionals in primary and secondary care are vital where another plank of integration is needed, to ensure people with dementia and their closest genuinely do get the right care in the right time at the right place. I have no doubt primary care, with their wide experience of medicine, and upholding a proactive stance too, would be vital in community based rehabilitation, including general practitioners. But the current service issues in resources for, recruitment to, excessive regulation of, and access to general practitioners in England cannot be ignored.

The UN 2016-2030 Sustainable Development Goals were launched with a commitment to “Leave No One Behind”, a similar theme having been ‘no decision about us without us’. I have a concern that the poorly named “dementia friendly communities”, being aimed at being politically inoffensive by the chief cheerleaders in England, and being so cost neutral, does not do enough to resolve social inequalities in reality.

We know this is a danger, say, for housing. But worldwide extrapolation of inequity would be disaster, particularly when we consider the number of people thought to be living with dementia in low and middle income countries around the world.

All too easily ‘dementia friendly communities’ can become a strapline as a sticking plaster for cuts elsewhere in the Big Society, to secure a quickie competitive advantage in marketing – this is indeed addressed in this briefing from March 2015 here:

“There have been concerns that the target created incentives for governments to focus on‘low hanging fruit’ rather than those most in need.”

As a consequence of sustained advocacy, persons with disabilities are now clearly included in the 17 SDGs and 169 implementation indicators. Although the needs of older persons are recognised, persons with dementia are in grave risk of being overlooked.

It is likely that, if Big Pharma are successful in producing orphan drugs capable of being regulated and distributed, there will be an inequity regarding domestic recommendations about making these drugs available. The ‘economics of rescue’ doctrine means that there should be no stone unturned in providing medications in palliative care; but NICE will have other views on the greatest benefit for the largest number of people in their econometric ullitarian cost-benefit analysis.

It is indeed likely that persons with dementia in Low and Middle Income Countries should be able to benefit from the long established WHO Community-Based Rehabilitation (CBR) Programme described here.

“Community-based rehabilitation (CBR) was initiated by WHO following the Declaration of Alma-Ata in 1978 in an effort to enhance the quality of life for people with disabilities and their families; meet their basic needs; and ensure their inclusion and participation. While initially a strategy to increase access to rehabilitation services in resource-constrained settings, CBR is now a multisectoral approach working to improve the equalization of opportunities and social inclusion of people with disabilities while combating the perpetual cycle of poverty and disability. CBR is implemented through the combined efforts of people with disabilities, their families and communities, and relevant government and non-government health, education, vocational, social and other services.”

As a clear example as what could be achieved by engaging trained professionals too into English dementia policy, the Royal College of Physicians of London have been leaders too.

See this interesting case study:

“This Future Hospital Programme case study describes how the Torbay and South Devon NHS Foundation Trust is fulfilling their aim of achieving stroke rehabilitation 7 days a week in both the Stroke Rehabilitation Unit and surrounding areas.”

Stroke care, like cancer care, is in a different place to dementia.

And we know why. The only hope in English policy appears to be some chosen ones selectively adding fertiliser to a few flowers blooming when the entire garden had actually been devoid of being watered for several years. And this needs fixing the gardener.

Unfortunately, people who are less skilled – but who are ‘advising’ or ‘supporting’ – might possibly insufficient alone to service needs of people living with dementia and carers, even if they meet the needs of certain charities, but they do serve a useful function in service provision. Quality is essential for enablement.



Please come to see my talk in the policy stream of the Alzheimer’s Disease International conference this week in Budapest.

Where would repeal of the Human Rights Act leave rights based advocacy for dementia?

high court

Tomorrow is in fact the day of the ‘Legal Aid walk’ – the annual event where law firms, law students, barristers, solicitors and supporting staff take to the streets in the heart of London to walk a fair old distance in support of legal aid and access to justice.

This is very timely. Law is one of my strong interests; so is dementia. I am in fact trained in both. This is why the imminent plan to repeal the Human Rights Act 1998 is of great significance to me. I have written previously on the huge importance of rights based approaches to dementia in my blogpost here, and I have even devoted a full chapter on it on my new book on domestic and global dementia policy. But even academic lawyers would be the first to admit they’re not astrologers; the future of the legislation on human rights is clearly unchartered territory even now.

There will be very many accounts of the view that repealing the Human Rights Act is a backward step in the law, many given by many eminent lawyers. I do not want to go over the same ground here, but needless to say they are widely available; such as by Philippe Sands or Keir Starmer.

The Conservative Party’s plan to establish a Bill of Rights to replace the Human Rights Act has helpfully been published. It was a clear manifesto pledge. If the opinion polls were correct, no one party expected to win the general election outright, so it’s quite likely the Conservative Party wished to lose the pledge on abolition of human rights to negotiation with the Liberal Democrats, for example. It is currently reported that the SNP wish to ‘fight attempts to abolish the Human Rights Act’. And it has been a longstanding commitment of the Scottish jurisdiction to promote ‘rights based approaches‘ in dementia for people with dementia and carers.

Whatever happens in the term of this parliament is unpredictable. Whilst the “Salisbury convention” provides that manifesto pledges should see the light of day on the statute books, it is also clear that there is a significant number of peers who will not condone abolition of the Human Rights Act. Lord Lester, a Liberal peer, has made it clear on the BBC Radio 4 programme that he does not want to make ‘wrecking amendments’, but takes the attitude that he does want to make the proposals ‘better law’. The Conservative Party have tried to send out the message that the proposed change in the law is not to abolish human rights, but the fact that Labour have just appointed Lord Charlie Falconer QC to spearhead the charge of the brigade as Shadow Lord Chancellor and Shadow Minister of Justice is very telling. Lord Falconer was indeed one of the architects of the original Human Rights Act under a previous administration. All it needs is for a “magnificent seven” in number to rebel; probably the Democrat Unionist Party are not the ones too, but ‘grandees’ with a legal training Ken Clarke QC MP and Dominic Grieve QC might.

Changes to the law theoretically offer an opportunity to include new ‘rights’, such as the right to a timely diagnosis of a medical condition. It is critical to note that not all rights in rights based advocacy for dementia come from human rights; there are rights in equality law which mitigate against discrimination, and rights in employment law which mitigate against unfair dismissal, for example. It is also important to note that not all rights are legal; for example it was morally repulsive to allow segregation under Apartheid in South Africa before a change in the law was afforded. There is therefore some basis to the messaging that rights existed before the Human Rights Act; they have done so since the Magna Carta in fact.

And rights have to be enforceable. At the moment, in England, there is a huge problem with access to justice, hence the importance of such initiatives such as the Legal Aid Walk. Legislation from the previous government in the form of the Legal aid and sentencing and punishment of offenders act 2012 was hugely detrimental for this cause, with concomitant destruction of law centres. Human rights are indeed enforceable through, for example, the High Court under judicial review, or through the Equality and Human Rights Commission.

But the critical thing about human rights is that they’re not as such ‘British rights’. They’re international, inalienable, available to everyone – they’re universal. Whilst we are still signatories to the European Convention on Human Rights, any British citizen is free to petition Strasbourg directly over an issue to do with human rights; it would be a huge deal if the UK sent out a message that it no longer wished to be a signatory of the Convention when it was originally one of its architects. Even with abolition of the Human Rights Act (1998) in this jurisdiction, dementia can still come under disability under the UN Convention for People with Disabilities (“UKCPD”). This statutory instrument has a whole host of rights, including the right for democratic representation and right to participate in public life (article 29) ( which the World Dementia Council would be wise to read). The UK may or may not be under current investigation for breaches of the UKCPD, and we are in any case observing the United Nations Declaration of Human Rights.

These rights are wide-ranging and important for our political narrative. They’re relevant to our discussion of capacity, that people with dementia have human rights regardless of their capacity (related cases such as the Bournewood Gap are particularly important here).  Such rights are relevant to various issues, such as “independent living”, and we can learn a lot from the wider disability movement here (such as the brilliant work of John Evans).  As indeed human rights are important for the devolution and Good Friday agreements, the discussion over human rights indeed embraces a wide range of stakeholders involved in dementia policy, such as SCIE, where dignity is intimately related to a right to be free from degrading treatment (see their guidelines). And unsurprisingly human rights are totally pervasive to the work of the Care Quality Commission. The success of human rights has been much to do with motivating a ‘social movement’, imbuing a sense of ‘rights consciousness’ in keen followers around the world.

I personally am a big advocate of ‘bounded rationality‘ in strategising about the future, in dealing with risk and uncertainty.  The discussion over human rights is clearly politically driven, but is essentially for me about protecting those people who are most vulnerable too. Living better with dementia policy is much enhanced with a rights based approach. Some strands in the debate are rational; some less so. But we are living in uncertain times, and political tensions are high. Soon places of the jigsaw will fall into place, and we will all be able to deal with it at the time.