A rights-based approach to people living beyond dementia

By Kate Swaffer

At the age of 49, I was diagnosed with a younger onset dementia, and was immediately told to ‘go home, give up work, give up university, and to live for the time I had left.’ Over the next few months, this negative prescription of disengagement from living continued, and followed with being told to “get my end of life affairs in order, and to get acquainted with aged care by going to a respite centre one day a month.” At no time was I told it was a terminal illness, not was I give any emotional support for it being one. I quickly coined the phrase, Prescribed Disengagement®, and Trademarked it. Being told there is nothing that can be done, to get our end of life affairs in order, and to get acquainted with aged care, upon diagnosis, is not only unpalatable, immoral and unethical, it is against our human right to be supported to live as well as possible with dementia, not only to die from it. After years of hearing others diagnosed with dementia say they received this same pathway to an immediate pseudo death, I decided it was a human rights issue.

Although I gave up work after to failing my driver’s license test, which I now realise I should have demanded reasonable adjustments to support me to stay at work, I had the sense to stay at university, and, discussing the increasing challenges I was finding with my studies, I asked a lecturer if they thought I should give up university. Luckily for me, their immediate reaction was to say no, keep living the life you want, and we can provide you with disability supports, in the same way we do for all other students with disabilities. After assessment of my disabilities, and strategies put in place to support them, with regular reviews as my symptoms changed therefore causing the disabilities to change, I managed to complete two undergraduate degrees, and have since gone on to complete a Master’s of Science in Dementia Care in 2014, and am currently a Ph.D. candidate at the University of Wollongong. Living beyond dementia is possible, as long as you are supported to do so.

In Geneva at the World Heath Organisation First Ministerial Conference on Dementia, I believe I was the first ever speaker in history with a diagnosis of dementia, to be an invited to present at the United Nations. It was therefore imperative that as Chair, CEO and co-founder of Dementia Alliance International, the peak body and global voice for people with dementia globally, representing more than 37 million people, I spoke up with absolute clarity about our rights. I asked for three things, all of which were included in the WHO Call To Action at the end of the conference.

  • People with dementia have a human right to a more ethical pathway of care, including our pre and post diagnostic care, and to more ethical pre and post diagnostic interventions including rehabilitation.
  • People with dementia must be treated with the same human rights as everyone else, under the Disability Discrimination Acts and UN Convention on the Rights of Persons with Disabilities
  • That dementia research does not only focus on a cure, but also on improving care

One might ask, why was it necessary to place dementia in the human rights and disability rights space? The reality is, in all countries and in different ways our human rights are being breached. For example as few as 10% of people with dementia get a diagnosis in a country such as India. In some western countries, the diagnosistic process is getting better, but the post diagnostic care and support is still in breach of our human rights, and does not include rehabilitation or other interventions to support us to live well. Even the Clinical Guidelines for Dementia in those countries who have them, do not suggest brain injury style rehabilitation, and yet, if I’d had a stroke, I would have been offered every opportunity to get back to living.

My experience is consistent with qualitative studies describing how people with dementia post-diagnosis experience loss of control, decreased activity, poorer relationships and increased negative emotions. This clinical practice post-diagnosis reflects the evidence base with very few non-pharmacological trials for mild dementia, particularly targeting quality of life as an outcome. It is time research started to look at living with dementia, but more importantly that the health care sector supports us to. It is also imperative society as a whole provides us with enabling and empowering disability strategies and support for the disabilities caused by the symptoms of dementia, quite simply, as another human right issue. If we had any other illness or injury causing disabilities, such as losing our legs in a road accident this type of disability support, and rehabilitation would be automatic. It needs also to be for people with dementia, as almost no one is at end stage and actually dying when they are first diagnosed.

I continue to choose to Live Beyond Dementia, and this would actually be relatively easy to translate into practice through provision of clinician training, studies into Prescribing Engagement, as opposed to Disengagement. This could contribute to a paradigm shift in how clinicians manage people recently diagnosed with dementia, and encourage further non-pharmacological research for mild dementia. This would in turn, change perceptions in society about people with dementia, thereby reducing stigma, isolation and discrimination, as well as the fear people have of dementia, which has taken over from cancer in terms of being the most feared disease over the aged of 65. In my next blog I will describe the holistic approach, the disability strategies, and non-pharmacological and psychosocial approaches I employ to live beyond dementia, and which emerging evidence is now supporting.

About the author

Kate Swaffer is Chair and Chief Executive of Dementia Alliance International 




Tell us about your experiences of choice and control over care and support

The Independent Living Strategy Group is made up disabled people and allies from a range of organisations.  It is convened by Baroness Jane Campbell.  The Group is conducting a survey to find out about people’s experiences of choice and control over their care and support.   We want to find out about your experiences in order to share them with the government and the public in the hope that it will help bring about improvements.  We carried out a similar survey last year, and the report of that can be read here

You, or a person acting with your permission on your behalf, can answer the questions here 

If you have any questions or comments about the survey, please contact John Waters, john.waters@in-control.org.uk

Thank you for contributing to this important research.

Harnessing the opportunities for independent living

It feels almost impossible to think about opportunities to advance independent living in England, such is the parlous state of the public finances and recent direction of public policy.   But in the spirit of the motto of this blogsite to ‘make hope possible, rather than despair convincing’ I’m going to have a go.  After all, the early pioneers of independent living did so against often unimaginable odds and some of the chief victories of the disability movement happened not under a centre left, but under a conservative government.

From social welfare to social investment

The first thing I want to highlight is how so called ‘austerity’ is not always cover for public spending reductions, but for public spend re-allocation. That is, recent government policy has often been about re-engineering the State to serve a different purpose, not necessarily shrinking the State (though that is clearly a goal as well). Such re-engineering in places appears to signal a trend from a social welfare state to what one might call a ‘social investment state.’ A prime example is the policy of 30 hours a week free childcare for households earning less than £100,000 a year. Here, a significant investment of public resources is designed, it is hoped, to increase labour market participation, increase tax revenues, decrease benefits expenditure and improve children’s life chances. Contrast this with social care, which continues to be viewed not as an investment but as the spiraling cost of an ageing society and is suffering eye watering cuts, or disability benefits, which suffer misrecognition and stigma permitting recipients only to be cast as ‘on the take’ or ‘vulnerable’.   Can we learn from the repositioning of childcare, not as a personal private matter, but as part of the public infrastructure and demonstrate the public interest case for investment in independent living?   This demands both credible, compelling evidence, new ideas for policy and clever strategic communications – something the DRILL programme might usefully support.

Halving the disability employment gap

Some regard this government goal with suspicion and the fact that policy makers and think tanks consistently start by identifying the primary ‘problem’ as the design of benefits and their effect on individual ‘incentives’ to work does little to assuage concern that the real goal is to extend sanctions (including in relation to failure to pursue courses of health treatment and rehabilitation) in order to cut benefits.

However, the commitment is also throwing new light onto the problem of barriers to employment for disabled people. The government has already decided to replace the Work Programme and to increase spending on Access to Work, and a White Paper is on its way.

DWP has pilots underway involving the use of personal budgets to pay for bespoke employment support.   The creation of the joint Department for Work and Pensions/Health ‘Disability and Health Employment Unit potentially offers opportunities to pick up where the Right to Control left off in looking beyond narrow ‘employment support’ at the wider supports a person might require to engage in the labour market. Moreover I feel there is a chance to reposition employment as a building block, rather than mere outcome or expression, of ‘independent living’ – in particular as a route to social connections, challenging the isolation that often predicts wider exclusion.   In this sense, employment and employers become part of the means to the end of independent living.

Health and social care integration

Again, people have many legitimate concerns about what this will mean in practice: that the cultures and approach of the health service will dominate, undermining the social model of disability both at a theoretical level but also in everyday practice as clinical decision making and health outcomes trump everything else; that what money is available among the NHS and local councils narrows down to focus only on ‘healthcare in the community.’ Conversely there are concerns about the implications of integrating two systems based on very different traditions of funding and entitlement.

Yet at the same time there are many areas where the doctrines of early action and prevention coincide with independent living and where the steps required to promote health and well-being are essentially the same as those long pursued by independent living advocates. For example I recently did some work in Scotland where disabled people in one city had been asked about their priorities for health and well-being. Top of their list was having somewhere to go and something to do. Here we can see the goals of choice, control and participation coincide the aim of overcoming isolation.   If resources could be levered out of acute healthcare towards supporting participation under the rubric of prevention of isolation, this strikes me as an opportunity to grab hold of.

Law Commission review of the Mental Capacity Act

With a draft Bill expected this year, the Law Commission consultation on replacing Deprivation of Liberty safeguards proposed that they be replaced with a new system, to be called ‘Protective Care’. The Law Commission suggest that

‘This system is not focused on authorising deprivations of liberty, but instead upon providing appropriate care and better outcomes for people who lack mental capacity and helping their family and carers.’

Patient safety

Bit of a tangential one this perhaps, but patient safety is a major priority for the current health secretary, mostly because of the Mid Staffs scandal but also in light of the death of Connor Sparrowhawk. While his focus may be on what happens to people in hospitals, it nevertheless also raises the question of why some people are in hospitals as opposed to being supported (and treated) in the community. Certainly the recent meeting of Connor Sparrowhawks parents with the Health Secretary indicated that this was the way he identified the problem.

Care Act implementation

We should make the very most of the opportunity presented by the Care Act.  Yes, it seems absurd to talk about social care as offering any opportunities in the face of the scale of cuts being implemented, but at the same time we have a number of key things enshrined in law and the opportunity is to positively shape the manner in which they are implemented – whether information and advice, care plans, personal budgets or independent advocacy. This is partly about monitoring, such as the report produced by the Independent Living Strategy group last year. But it is also about promoting ideas and showcasing best practices – about influencing by demonstrating the art of the possible.   In particular, it is about showing that independent living, far from being a problem, offers much needed solutions.

Beyond the State

Finally, I have concentrated here on the role of the State in advancing independent living, but in practice what makes the greatest difference in the years to come is likely to lie beyond the State – new technologies, the changing nature of the workplace, social action, new civil society institutions, social attitudes.   I will explore these in a separate post soon.

I am sure there are other opportunities, just as I am sure people will regard what I say above as hopelessly naïve, but I look forward to the debate.

Integration of health, social care and beyond – mergers, acquisitions or hostile takeovers?

All our lives rely upon functioning infrastructure and on mutually understood and commonly practiced rules and rituals. From the moment we wake up to when we go to bed and on through the night we depend on stuff to just… work. From switching on the light in the morning, checking our Twitter feed, making a cup of tea and getting a shower to catching the bus or train, or driving our usual route to work, to arriving at work, switching on our computer, accessing our emails, using the photocopier, making ourselves a cup of tea, going to the toilet, a post work drink, making our way home, making our dinner in the oven, phoning friends and settling down to watch the TV.   Only if these things function seamlessly can we function seamlessly. All the while, multitudes of different actors are each independently ensuring that this infrastructure is working properly.

When the chain ceases to function seamlessly, we can no longer function seamlessly.   There’s no hot water to take a shower. The train is cancelled. We do not have an internet connection and so on.   Sometimes we wrongly assume that things are going to be there for us when we need them, only to find out too late that they are not – like flood defences, or social care.

To these ends it seems intuitive to welcome coordination and closer integration of different elements of public infrastructure, including health and social care, as a vehicle for creating more seamless support.   Yet with such integration come risks of both ‘domination’ and ‘infection’.

There is clearly a trend towards the integration of health and social care. On the one hand this makes sense in removing some of the nonsensical and artificial divisions that exist between the two systems, and in making better use of public resources, in particular through early action and prevention. It also offers the prospect of leveraging resources from the still popular and comparatively protected and well-funded NHS into the still largely unknown, already under-funded and increasingly decimated social care system. Yet there seems a genuine risk that social care simply becomes ‘healthcare in the community’, with health outcomes dominating strategic decision-making and the outcomes attached to individual packages of support. In this scenario social care is increasingly positioned as an answer to the pressures of the NHS and little more – an acquisition or hostile takeover, not a merger – and there is certainly evidence of this in the recent rhetoric of politicians from all sides and from the head of NHS England, Simon Stevens. Despite the Care Act, the role of social care in supporting wider dimensions of ‘well-being’ as ends in themselves, such as participation in family and community life or employment could be overwhelmed.

Regarding infection, the risk cuts both ways: healthcare largely remains a system in which professionals knows best, whereas social care has at least strived to embrace notions of self-directed support. On the other hand, healthcare remains overwhelmingly focused on improving people’s lives, irrespective of means, whereas social work is increasingly focused on gatekeeping ever-scarce resources and on managing risk.

It seems probable that we will soon be talking about how wider public infrastructure might be more closely aligned or integrated, including for example employment support, support with education and social security.   The government has recently announced its plans to devolve Attendance Allowance to local councils.   In Scotland, to which much of the disability benefits system is to be devolved, the Convention of Scottish Local Authorities (Cosla) is already making a bid to administer the benefits alongside its roles in relation to integrated health and social care. A new ‘Disability and Health Employment Unit’ has been established under the auspices of the Department for Work and Pensions and Department for Health.

Which imperatives will dominate as these areas of policy and delivery become more closely aligned and integrated?   What culture and ethos will infect the whole? Can DWP’s culture of behavioural management, conditions and sanctions successfully combine with social care’s goal of restoring self-determination to those requiring support (certainly the experience of the Right to Control pilots suggests not)?   Will getting well become an obligation, with people forced into courses of health treatment as a condition of benefits entitlement, especially in relation to mental health for example?   Will health treatment increasingly be subject to the same gatekeeping as social care? How can the idea rooted in modern ‘welfare to work’ policy that receiving benefits amounts to dependence be combined with the idea of people receiving money in the form of direct payments from the State to support their independence?   And what of public attitudes – which differ markedly in relation to support for the NHS when contrasted with social security or social housing for example? Will greater integration help soften attitudes where they are presently harsh, or harden them where they are currently more benign?

There is a grave risk that we are on a slippery slope towards integration without first asking what the various items that are being integrated were originally for, how they function in different ways and hence what might be lost as well as what is to be gained.   How can we harness the ‘added shareholder value’ of integrating public spending and services without the risk that hostile takeovers rob us of those things we hold dear while increasing the influence of those we object to most?


A future for social care in a Scottish ‘investment state’?

By Neil Crowther*

I’m really excited to be travelling up to Edinburgh this weekend to support an event hosted by the Independent Living in Scotland project on Monday.  The event is part of ILiS’s ongoing dialogue on the future of social care in Scotland, bringing together diverse social care stakeholders to develop a ‘statement of ambition’, which I am helping to draft.

The reading I have done in preparation is depressing and terrifying in equal measure.  Scotland has already endured massive spending cuts, but with respect to everyday services such as social care the biggest cuts are yet to come.   The Commission on the Future of Public Services in Scotland estimated that the Scottish public sector would face a £39 Billion shortfall between 2010/11 and 2024/5 – the year public spending is forecast to return to 2010 levels. To put that figure into perspective, it is equivalent to funding adult social care in Scotland for 13 years.

In the immediate term there seems little that the Scottish Government is able or prepared to do about Westminster-imposed austerity.  Scotland’s Finance Minister John Swinney recently ruled out using powers to set higher income tax rates in Scotland and froze council tax for a further year.  The grant to Scotland from the UK government will continue to go down in real terms for the next decade as George Osborne pursues a budget surplus.  Since Scotland introduce free personal care for older people in 2003, local council charging for social care has risen sharply, albeit unevenly with councils charging between £18 per hour and zero for home care depending on where people live.  As with the rest of the UK, eligibility for social care focuses on those with ‘critical or substantial’ needs and people who are eligible are receiving less generous packages of support or having their packages cut.

But amidst the gloom, some potential light.  Scotland may have decided to remain part of the UK at its recent independence referendum, but be in no doubt that the political economy of Scotland is developing along very different lines to that in England.

Of particular interest to readers of this blog will be central role that the UN Convention on the Rights of Persons with Disabilities, and human rights more generally, is playing in shaping policy and programmes.  The Scottish Government is presently consulting on its draft delivery plan on the UNCRPD, while the Convention of Scottish Local Authorities (Cosla) is ahead of the game having already published its own CRPD implementation plan.       In December, First Minister Nicola Sturgeon indicated the Scottish Government’s preparedness to consider incorporating the Convention and other international human rights treaties to which the UK is party into Scots law.

Arguably the biggest influence on social care reform in Scotland right now is integration of health and social care.  Following the Public Bodies (Joint Working Act) 2014 National Health and Wellbeing Outcomes have been established for health and social care and there is a requirement for NHS Boards and local councils to integrate health and social care budgets.  Each area will have an integration board by April of this year.   While there are many reasons to celebrate these developments, there is also concern that social care may become narrowly focused on ‘healthcare in the community’, undermining its broader role in supporting disabled people’s social and economic participation.  This is a particular risk if the only new funding to go into social care comes from the NHS.

To those ends, another big change on the horizon is contained in the Scotland Bill: devolution of social security powers related to disabled people.  This will see DLA/PIP, Carers Allowance, ESA and other benefits devolved to Scotland.  On the positive side, this presents an opportunity for Scotland to cultivate an entirely different approach to that which has evolved in England, and in particular to carve out a social security system that genuinely supports independent living.  Yet there is a grave risk that this money could end up plugging gaps in underfunded social services, and indeed Cosla has already proposed that such benefits should be administered by local councils.

More broadly, what I find exciting is the potential for Scotland in time to emulate a Scandinavian model, shifting from a ‘social welfare’ approach to a ‘social investment’ one. Nicola Sturgeon seemed to exemplify such thinking in her articulation of a future SNP government’s policy on childcare when she said this week:

‘Our most transformational infrastructure investment in the next Parliament will be in early years and childcare.  We will provide parents with 30 hours a week of government funded childcare enabling them to return to work, to pursue their careers and to know that their children are being well cared for, well educated and given the best start in life’ 

Social care has not benefited from such framing to date, nor has it enjoyed a research agenda to underpin a narrative that positions it persuasively not as a growing cost, but as crucial part of the national infrastructure ripe for investment.  As I have argued elsewhere, I believe that for independent living to have a future, it also has to be situated within the frame of social investment, not social welfare.

The public spending environment in Scotland is bleak.  Yet choices will continue to be made about how to spend the many billions of pounds that will still be invested in public services over the coming decade. Spending that can be shown to save money down the line, to strengthen communities and which can contribute to economic growth and prosperity is most likely to win out.  Without a narrative and underpinning evidence to sustain the case that social care (and independent living more widely) meet these investment tests, it will I believe continue its journey to the margins.


*Neil is writing in an independent capacity






Promoting people’s right to choice and control under the Care Act 2014 – how are local authorities performing?

13 October 2015

The Independent Living Strategy Group has today published a report concerning the performance of local authorities in respect of people’s right to choice and control under the Care Act 2014.  The report draws on the findings of a survey of social care recipients regarding their perceptions of choice, control and well-being over the past year and of a survey of local authority guidance regarding the Care Act 2014.

The key findings are:

  • Despite the emphasis on wellbeing and choice and control in the Care Act 2014, almost half (45%) of respondents to our survey said that their quality of life had reduced and almost a third (30%) said that they had experienced a reduction of choice and control over the past year
  • Half said their need for support had increased and yet only 22% had experienced a corresponding increase in paid support over the past year. Most additional support came from family and friends. Where people did receive additional support it was most likely to come from family and friends if available.
  • Of the 57% of respondents who had their care package reassessed in the previous 12 months, 17% said that they had been told that there was a financial cap placed on certain types of expenditure
  • 29% of respondents reported restrictions being placed on their use of direct payments or personal budgets. 33% didn’t know whether they were subject to any restrictions. 
  • Of those reporting that their use of direct payments or personal budgets had been subject to restrictions, stipulations regarding the tasks of personal assistants/carers were most commonly reported (48%). 18% said that they had had their personal support plan declined. 14% reported they had been limited to choosing from a shortlist of providers. 11% said they had been limited to using a pre-payment card.
  • Of those survey respondents who are transitioning from Independent Living Fund to local authority support, 14% reported they had been told that they should expect less support in future, while the majority (56%) said they had not been told whether their support would increase, decrease or stay the same.

Our analysis of local authority guidance on the Care Act found that:

  • Local authorities are generally not yet meeting their duties to ensure the provision of clear, accessible, accurate and locally tailored information regarding care and support.   This means that those seeking or receiving care and support lack access to information regarding their rights and entitlements, sufficient to exercise choice and control.
  • Some local authorities have produced ‘quick guides’ explaining the key features of the Care Act. These rarely emphasize choice and control and the universal entitlement to a personal budget.
  • Local authorities are not defining personal budgets in a way that corresponds with their definition in the Care Act statutory guidance. Whereas the guidance describes personal budgets as a mechanism for choice and control, the guidance we reviewed typically describes personal budgets only as the sum of money allocated to meet care and support needs.
  • Some local authorities infer that if a person opts for their personal budget to be managed by the local authority that they should anticipate having less control over how it is spent than if they choose a direct payment. Some say, in effect, that the person will need to accept that the council chooses to provide. This does not meet the requirements of the Care Act statutory guidance which says that the option chosen should have no bearing on the ability of individuals to direct their support.

Looking beyond local authority care and support:

  • In relation to NHS Continuing Care, some Clinical Commissioning Groups have adopted explicit policies which place financial limits on the amount that will be spent to support an individual to live in their own home as opposed to residential or nursing care. This is likely to have a particularly impact on people who would previously have accessed support from the Independent Living Fund

Alongside the report the Group has published a ‘key messages checklist’ to assist individuals in understanding their rights and local authorities to meet their duties to produce clear, accurate and accessible information about the Care Act 2014.

The state of independent living – survey

There’s still time to complete this important survey on the state of independent living.

This short survey is being carried out by a group of organisations and activists that have been meeting for past two years to think about how to move the independent living agenda forwards. You can read more about us here http://www.in-control.org.uk/blog/losing-control.aspx

We want to know about the experiences of people who access support from their local councils and find out whether choice and control over that support is changing. To help us understand these issues we would be extremely grateful if you could spare a few moments to complete this short survey to share your own experiences.