Alistair Burns (@ABurns1907) speaks on dementia

Prof Alistair Burns is the National Clinical Lead for Dementia (@ABurns1907).

In addition to holding the post of Vice Dean for Clinical Affairs, Professor Alistair Burns (MBChB, FRCP, FRCPsych, MD, MPhil, DHMSA) is Professor of Old Age Psychiatry at The University of Manchester, Clinical Director for the Manchester Academic Health Science Centre (MAHSC) and an Honorary Consultant Old Age Psychiatrist in the Manchester Mental Health and Social Care Trust (MMHSCT). He is the National Clinical Director for Dementia in England.

The Vice Dean for Clinical Affairs has both a strategic and a management role, providing the overall leadership for the Faculty’s complex relationship with the NHS, nationally, regionally and locally. The Vice Dean is a member of the Faculty Management Team and interacts effectively with other members of that team, particularly the Associate Dean for Research and the Deputy Director for Medical Education. He will represent the Vice-President and Dean in matters relating to the interface between the University and NHS Trusts.

He graduated in medicine in Glasgow in 1980 and trained in psychiatry at the Maudsley Hospital and Institute of Psychiatry in London. He became the Foundation Chair of Old Age Psychiatry in The University of Manchester in 1992, where he has been Head of the Division of Psychiatry and is Deputy Dean of the Faculty of Medical and Human Sciences. He has been Director of Research and Development in the University Hospital of South Manchester NHS Trust (UHSMT) and Vice-Chairman of the Hospital Board. He leads the memory clinic in MMHSCT and the old age liaison psychiatry service in UHSMT.

Professor Burns is a Past President of the International Psychogeriatric Association, is on the board of the European Association of Geriatric Psychiatry, and is a member of the Council of the British Association for Psychopharmacology and the Medical Research Council College of Experts. He is Editor of the International Journal of Geriatric Psychiatry, Assistant Editor of the British Journal of Psychiatry, and is on the Editorial Boards of ‘International Psychogeriatrics’ and the ‘European Journal of Psychiatry’.

Source:  University of Manchester website.

Are individuals living with dementia “recipients” of care?

Language is very important. Only this week, the media was stuffed full of talk of dementia being a ‘horrible disease’, and people ‘suffering’.

A recent Telegraph article cited, “Health Secretary Jeremy Hunt says it is “utterly shocking” that only half of people suffering from dementia are being formally diagnosed.”

Society has a certain image of dementia. It really is no use denying that this image is horribly negative, and feeding on this fear can be low-hanging fruit for raising funds through charity.

In this scheme of thinking, those with the dementia are only viewed through the prism of their illness, and this is often reduced to the image of its last and most tragic phases.

It is as if as soon as a diagnosis of a progressive dementia is made, the person in question, it is perceived by the rest of society, automatically becomes incapable of taking any autonomous decisions, loses his/her personality and identity and immediately needs to be cared for.


In reality, however, this illness can develop quite slowly: between the moment when it is diagnosed and the terminal phase, there may be years of development. Moreover, people living with the illness can rarely have the opportunity to express their thoughts and feelings about it: there is communication about them, but only rarely with them. The individual sadly disappears behind the blanket label of an illness.

The term “suffering”, however, sounds negative, and does not support the concept of “personhood”, and certainly does not fit with a philosophy of “hope” and “wellness”.

The way the NHS has latterly been structured as a market also reinforces this customer-supplier master-servile relationship. Dementia care is a ‘service’ you can pay for, with or without a personal health budget.

The dominant notion itself that the need of people with dementia to socialise should be met by “services” is disempowering, for the concept of service incorporates the notions of “providers” and “recipients”; of the “helpers” and “the helped”, of “us” and them”.

These notions further perpetuate the stigmatising assumption that people with dementia are only able to participate in relationships as “receivers”, and that relating to them is a problem for those who do not have the disease: they further advance the widespread perception that people with dementia are, essentially, a “burden” on their families and society.

This term “burden” can perhaps help validate the ‘burden’ some caregivers experience, but should not be assumed and should be avoided when speaking in generalities such as public presentations.

This language and terminology are in desperate need of change, and the prevailing perception of people past the first stages of dementia as just receivers of care, and users of services, needs drastic reframing.

The truth is that, as the symptoms of the disease progress, people with dementia can still play an active role in society, if provided with support, and this support can very often be provided by fellow citizens, rather than by professionals paid to deliver a service.

The purpose of person-centred language is to recognise the impact of language on thoughts and actions, to ensure language does not diminish the uniqueness and intrinsic value of each person.

Personhood is pivotal. This is the standing or status that is bestowed upon one human being by others in the context of relationship and social being. It implies recognition, respect and trust.

The aim is to create the positive conditions where the person can live without stigma; where people are treated with warmth and authenticity, listened to without judgment and are given opportunity for self-expression.

There are, however, ways to ‘reframe’ this debate.

Framing is a fast developing concept, as much in communication sciences as in other disciplines. This is partly due to the fact that it is a rather flexible approach that lends itself to many applications.

New framework

When there is a question relating to knowing how a particular subject is presented, in the media for instance, framing immediately springs to mind.

Instead of painting the illness as a homogenous and unchanging totality, it would be preferable to place the accent on its progressive and developmental nature.

One can put the accent on continuing to be a real person despite the decline due to the illness: acknowledge the personality, the identity and the life journey of those with a progressive dementia.

One can also develop empowerment and social inclusion with people with a progressive dementia. Such individuals are more than passive and dependent consumers of help and care services. They have resources that should be mobilized. The principle of inclusion implies that society is composed of all its citizens. However, this needs competent leadership.

Let those who living with dementia speak. It will provide others with one of the most powerful counter-examples in relation to the current dominant image, which often makes the individual disappear behind his/her illness.

Let your respect for those living with the dementia be obvious in what you have to say.

It is useful also never to forget that people with Alzheimer’s disease also have their own life story, their own personality and character. This is because their long-term memories are relatively preserved, due to a phenomenon first characterised by the French neurologist Ribot in the 1880s. Enable these aspects to be expressed too.

Those who disseminate messages, especially via texts designed to influence people, may deliberately choose a frame that the reader is supposed to pick up and appropriate so as to henceforth view reality in this way.

Given that frames form part of any culture, many of them are common to both the sender and the recipient of a given message.

The question of whether framing is a conscious process remains open to discussion: how far will the writer of a given text deliberately choose a frame that serves his own interests?

As we approach the G8 leading on the subject of what is important in dementia diagnosis, research and care, it is all the more important that we frame the discussion properly.

There are so many stakeholders in English dementia policy, it can be quite uncertain know where the current dementia policy has come from.

David Cameron has often argued that ‘it is not where you’ve come from, it’s where you’re going to’. If one of the goals is destigmatising dementia in society, how we articulate the present debate today is vital to our progress tomorrow.

This means not talking about ‘horrible’ and ‘suffering’ in a way as to encourage ‘moral panic’.

This means treating people with dementia, living at all stages with any particular condition, with the dignity they deserve; this will enormously help carers too.

Jeremy Hunt’s message on dementia should have been ‘screened’ for damaging myths

My presumption is that I wish to be extremely positive about HM Government’s own volition about leading the G8 with the subject of dementia.

Also, the “Prime Minister’s Dementia Challenge”, which sets out a roadmap for dementia for this year and next, has been a success which I much admire.

David Cameron and Jeremy Hunt, and their team, must rightly be applauded.

However, some accidental problems with the latest message appear to have crept in unfortunately.

The article in the Telegraph says that, “Health Secretary Jeremy Hunt says it is “utterly shocking” that only half of people suffering from dementia are being formally diagnosed.”

You can watch the video here.

Recently in English policy a skirmish over screening has been temporarily staved off by certain stakeholders avoiding ‘the S word’.

They have decided to plump for the ‘C-word instead’.


But in fairness Jeremy Hunt MP, Secretary of State for Health, in the actual “piece to camera” does not use the word “suffering”.

This is particularly ironic as Hunt later says, “”We’ve got to overcome the stigma.”

A major thrust of dementia must be to destigmatise dementia, by emphasise the myriad of things which can be done to help individuals living with dementia, like improvements of the house and the outside environment, non-statutory advocacy or dementia friendly communities.

Hunt’s attempts to overcome the stigma are, unfortunately, somewhat mitigated by his claim that,

“Dementia is a really horrible condition.”

Hunt mentions that “This is not surprisingly because memory is an intrinsic part of all of this.”

The meme that memory problems are synonymous with dementia remains a persistent toxic misrepresentation.

Not all memory problems are dementia (depression can cause profound memory problems.)

Not all dementia presents with memory problems. One of the most common forms of dementia in the age group below 60 is the behavioural variant of frontotemporal dementia.

This presents typically with an insidious change in behaviour and personality, often not noticed by the person himself or herself (but noticed by somebody close by.)

Even some of such individuals can present with plum-normal brain scans.

Advanced MRI brain scans

This small fact would aggravate hugely physics experts to sit on dementia clinical steering groups perhaps, if they knew.

A number of parliamentarians have recently emphasised the need for prevention.

This is indeed a worthy claim.

“You can change your lifestyle to help to stave off the diagnosis.”

However the evidence for this claim is extremely scant.

Non-clinicians in policy must not give false hope to members of society.

This is extremely irresponsible.

Hunt continues, “GPs have been reluctant to give a diagnosis as they’ve thought that ‘nothing is really going to happen'”

There has been in recent years a language depicting war, between GPs and persons with a possible diagnosis of dementia.

There is a very damaging myth, perpetuated by some influential people in the third sector, that GPs are actively withholding a dementia diagnosis in some people.

This claim undermines the credibility and probity of medical professionals, but GPs are relatively defenceless against such a slur.

Hunt says, “If people are worried, come and talk to your GP.”

A moral dementia policy is giving correct support including non-pharmacological interventions to support people living with dementia, as well as support for carers who often experience significant pressures in caring themselves.

People need to be accurately diagnosed with dementia. A wrong ‘label’ of dementia, for a person with no dementia, can do much harm.

Nonetheless, the idea of identifying correctly new people with dementia such that they can be given the right support is a commendable one.

It’s essential though that we do not enmesh this with this policy goal becoming targets, and clinicians being thrown off track by perverse incentives which are not directly beneficial to patients of the NHS.

#G8summit: Hazel Blears MP (@HazelBlearsMP) praises patients and carers, and calls for research into living well with dementia

On Thursday 28 November 2013, MPs debated the G8 summit on dementia. The debate was chosen by the Backbench Business Committee following a representation from Tracey Crouch. The application for debate was also sponsored by Hazel Blears and Paul Burstow.

This discussion, by parliamentarians, was in fact a very fair and balanced consideration of the practical issues facing the contemporary scene of dementia.

A lot has hopefully moved on from the attitude that, “Dot has gone a bit dotty”.

Diagnosis of the dementias is only part of the story.

The subsequent ‘treatment’ and ‘cure’ for dementia have been actively debated, but this parliamentary debate acknowledged that we have come on ‘leaps and bounds’ for enabling individuals with dementia potentially to live positively with dementia.

There’s clearly a complex parapluie of factors at play here. Does a current lack of cure for dementia lead to more stigma, or does stigma contribute to a current lack of cure for dementia?

Beyond the Prime Minister’s Dementia Challenge, there will need to be a long-term dementia strategy to expire next year, it is argued.

The UK is leading the discussion of dementia for the G8, but embarrassingly does not have a strategy yet for 2025 compared to some of its international colleagues.

There has been an increase in investment in dementia research, but this has come from a very low base, representing less than 1% of the annual science budget. It is hoped that this budget will increase, including funding for prevention as well as quality-of-life and wellbeing.

A great thing about this debate was its acknowledgement that not all dementia is Alzheimer’s disease; this is crucial for us to consider how best to allocate monies for research into other types of dementia too, such as the frontotemporal dementias.

brain areas

Another brilliant aspect was an appreciation that there needs to be support for carers, for avoidance of ‘crises’ – including support for the ‘Dementia Action Alliance’ – in the run-up to the #G8 dementia and beyond.

You can watch this excellent debate here.

Hazel Blears (@HazelBlearsMP) is the Labour MP for Salford. Her submission to the #G8 debate, as provided in Hansard, is as follows. Hazel is well known to be a ‘champion’ for dementia.

Hazel Blears (Salford and Eccles) (Lab): It is a great pleasure to follow the hon. Member for Chatham and Aylesford (Tracey Crouch), my colleague on the all-party group. It is also a great pleasure to see you in the Chair, Madam Deputy Speaker. This is my first opportunity to contribute to a debate under your chairmanship, and I would like to congratulate you on your election.

While I am handing out congratulations, I would like to congratulate the Prime Minister, too, on the personal commitment he has shown on dementia. [Interruption.] Credit where it is due. Those who have the presidency of the G8 have an opportunity to name a subject around which they would like to mobilise the international community. In playing his card at the G8, the Prime Minister has chosen dementia. I commend him for taking that action. I believe that international collaboration will be the way to achieve the next big leap forward, particularly on the research agenda. I support what the Prime Minister said at Prime Minister’s questions yesterday—that this issue is not a matter only for world leaders, important though they are; it is a matter for every single person in the community, whether they be a world leader, a health Minister or an ordinary citizen. Everybody has a role to play.

I shall start with the people who have dementia, along with their families and their carers. When we promote policy, do collaboration or talk about international research, we must constantly remind ourselves that the people with the disease and their carers and families are usually the most expert people in the system. Therefore, the services that we provide, the quality of care and the innovations we develop have to be shaped and guided by those people. We must empower them to make their voices heard in this debate. When we bring together our creativity, our imagination and the huge brain power in the research community, we must always bring to this issue, too, our own humanity. We must remember that people with dementia are valuable and loved human beings. If we can keep that at the forefront of our minds, we will make progress and be doing absolutely the right thing.

During Question Time yesterday I mentioned a lady called Joy Watson. I met her a little while ago. She is only 55, but she has early-onset dementia. Her family was devastated. When she went into shops, she might be a little confused over her change or what she needed to order, and the shops—and sometimes the customers—would be irritated with her, tutting and asking her to hurry up. She took to wearing a badge, which she designed herself, saying “I have got Alzheimer’s; please be patient with me”. She should not need to do that. Nowadays there is a scheme—I think it is called the purple angel scheme, and Joy is promoting it—so that people can wear a purple angel on their T-shirts as a means of raising awareness in every single part of our community.

In Salford, we have worked on this agenda for a number of years. We have just formed our dementia action alliance, with 30 organisations now committed to action plans to make us, I hope, the first dementia-friendly community in Greater Manchester. As well as health, education and housing bodies, we have the Lowry arts centre and our shopping centres included in the scheme. I think we have the first private-hire taxi firm in the country to be involved in this, Mainline Sevens taxis. It has trained 400 drivers and has an account system so that people with dementia do not have to fiddle with their money when they get in a taxi. All those groups are now dementia aware. That shows the really practical things that can be done.On the research side, I am delighted to say that tomorrow, Salford university will launch the Salford Institute for Dementia, bringing together the faculty of health and social care with departments dealing with the built environment, computers, IT, arts and media—showing the multidisciplinary approach that will apply. That group will draw together and disseminate research on living well with dementia. I think this is a fabulous academic development.

Hazel Blears therefore congratulated the Prime Minister for choosing dementia as a topic he wished to talk about.

It is noteworthy that patients themselves and their carers are the most expert in these complex conditions, and their voices must be heard.

Few will disagree with this.

All stick and no carrot? How much diagnosis, but how much actual care, of dementia?

Carrot and stick

The UK is hosting a G8 summit on dementia in London on 11 December. The summit aims to develop co-ordinated global action on dementia.

A “carrot and stick approach” is an idiom that refers to a policy of offering a combination of rewards and punishment to induce behaviour. It is named in reference to a cart driver dangling a carrot in front of a mule and holding a stick behind it. The mule would move towards the carrot because it wants the reward of food, while also moving away from the stick behind it, since it does not want the punishment of pain, thus drawing the cart.

The “quality outcomes framework” has attracted a lot of criticism recently, in terms of GPs being incentivised to collect data relevant to ‘case finding’ new people with dementia. It has been widely criticised as a form of screening, which, for public health, physicians have found inadvisable.

Dr Martin Brunet, in the influential Journal of Dementia Care, May/June 2013 edition, as a GP and prominent thought leader in dementia primary care, wrote:

What is most worrying about the Alzheimer’s Society figures is the poor access to memory clinics in some areas: “The survey showed the average waiting time for an appointment is 32.5 working days, which is over 4-6 weeks (recommended by Memory Service National Accreditation Programme). Some memory clinics reported longer waiting times of up to 9 months.

Unfortunately this result was ignored by the Health Secretary, who preferred to focus only on diagnosis rates, while blaming healthcare professionals for being unaware of the symptoms and nihilistic about treatment, claiming that: “Some even believe that without effective cure there’s no point putting people through the anxiety of a memory test – even though drugs can help stave off the condition for several years.” His statement about drugs affecting the course of the disease is completely unsupported by the evidence and contrary to both the WAR and WHO report.

Alex Andreou writes in the Guardian on 1 February 2013, “The consolation of Alzheimer’s disease”:

The lack of real support – practical and emotional – for our family has been staggering. Nobody will tell you what to expect, or help you develop the psychological tools for coping. I understand fully that each patient is different, and each patient-carer relationship equally unique. But, surely, some of the features of loved ones’ reactions to it are common.

Alex’s article was even the more striking, as the article was in the context of his experience of his own mother. It was a very touching and moving account, which crystallised what is typical of beliefs, concerns and expectations of friends and relatives, including carers.

What is important as a priority in English dementia policy is an issue which simply won’t go away, and, because of the sheer number of different stakeholders involved, it can hard to work out where this policy exactly is coming from.

David Cameron answered two questions on #G8dementia (the G8 Dementia Summit) this afternoon in Prime Minister’s Questions. It is recorded in Hansard here.

The first question was from Richard Fuller, Conservative MP for Bedford, enquiring about “real progress on dementia research and care”. Cameron decided to take as the focus of his answer his desire to improve dementia diagnosis rates.  The answer did not address dementia care from the NHS.

First question

The second question was from Hazel Blears,  who asked specifically about quality of care and prevention. The answer focused on ‘dementia friendly communities’, which is a global plank of policy but which is being serviced predominantly by the third sector seeking dominant positioning. That plank of policy is of course rightly to be applauded for its inclusivity and many other reasons. The answer did not, again however, address dementia care from the NHS.

Second question

In a press release from the Alzheimer’s Society, it is stated that a key priority of the G8 Dementia Summit claims as follows, ” Stepping up the global drive for a cure and better treatments must be a key priority.”

Big Pharma has not made great progress thus far in finding a cure for Alzheimer’s disease, a major form of dementia.

However, their statement does not mentions of wellbeing in dementia care widely recognised by experts in this area. Whilst the therapeutic efficacy of drugs in early stages for improving memory in Alzheimer’s Disease, the most common form of dementia worldwide, is modest at best, most experts recognise the real progress in research into wellbeing as well as wellbeing interventions.

These aspects include design of the ward, design of the house, attention to the external community (such as signage and paving), advocacy, careful attention to the person and personhood, assistive technology and other innovations. Dementia friendly communities, as an established worldwide initiative, are definitely important too.

David Cameron’s answers will cause genuine concern amongst academics for the #G8 summit. These two questions were about the progress in research and quality of care: i.e. what happens to real patients on the ground, including what happens from the NHS.

These two answers and certain presentations of the G8 summit represent however a potential corporatisation of the dementia debate, which many professional academics and clinicians in this area have been voicing concerns about for some time. It is just as well that bloggers who know the real difficulties involved, as well as actual people living with dementia, will be asked to contribute to the #G8dementia summit – and beyond – to provide balance.

I have now signed off the final proofs

I have now ‘signed off’ the final proofs. The next thing is to organise  a book launch evening for friends who’ve been following the progress of the book. Please let me know if you wish to be invited at, though it’s fairly certain I will be inviting you anyway if I’ve been in regular contact on my Twitter accounts @legalaware or @dementia_2014.


Dementia friendly communities: how creating shared value became so important in English policy

There is a strong sense from the National Dementia Strategy (2009) of the need for individuals living well with dementia to be part of a wider network which creates higher shared value. The establishment and maintenance of such networks will provide direct local peer support for people with dementia and their carers. It will also enable people with dementia and their carers to take an active role in the development and prioritisation of local services There is, however, a growing realisation that many settings are not in fact “dementia friendly”. In the Department of Health’s “Improving care for people with dementia”, it is described that a quarter of hospital beds are occupied by people with dementia. To improve health and care services for people with dementia, by March 2013 the current English policy is committed  asking every hospital in England to commit to becoming dementia-friendly. Indeed, the UK Government reported in “Improving care for people with dementia”, on the UK government website 25 March 2013 that ‘dementia friendly communities’ are a key priority.

It is argued that it will take time for communities to become truly dementia friendly. Groups in over 20 areas, that have now committed to working towards becoming dementia friendly villages, towns and cities. As we develop a process and criteria for developing dementia friendly communities we expect this number to grow. For example, at the time of writing, thirty new members have signed up to the Dementia Action Alliance (DAA), taking the number of bodies and organisations to over hundred.  Each organisation has produced an action plan on what they will do to become more dementia friendly. The DAA is a membership body committed to transforming the quality of life of people living with dementia in the UK and the millions of people who care for them.


People with dementia and carers have described seven outcomes that must be met to ensure that they live well with the condition (Dementia Action Alliance).

The history of this “declaration” is summarised thus:

“Working in partnership with the initial signatories, people with dementia and their family carers described seven outcomes they would like to see in their lives. They provide an ambitious and achievable vision of how people with dementia and their families are supported by society. All individuals and organisations, large and small, can play a role in making it a reality.”

The elements are:

  • I have personal choice and control or influence over decisions about me
  • I know that services are designed around me and my needs
  • I have support that helps me live my life
  • I have the knowledge and know-how to get what I need
  • I live in an enabling and supportive environment where I feel valued and understood

This work, alongside other research on quality of life for people affected by dementia, shows that many issues influence how well people live, from health and social care, to social relationships, engagement in activities, a sense of belonging and of being a valued part of family, community and civic life. Other work also highlights the importance of society and developing age-friendly environments.

Domestic and international context 

The RSA’s “Connected Communities” project describes itself as, “multi-faceted comprising several interrelated research projects, through which we aim to gain a better understanding of the conditions under which a new civic collectivism, or social productivity, may emerge – one that is organic, spontaneous, and bottom-up.”

The WHO “age friendly communities” or “age friendly cities” initiative is also very significant. In 2008, for the first time in history, the majority of the world’s population lived in cities. Urban populations will continue to grow in the future. It is estimated that around 3 out of every five people will live in an urban area by 2030.At the same time, as cities around the world are growing, their residents are growing older. The proportion of the global population aged 60 will double from 11% in 2006 to 22% by 2050. According to WHO, making cities and communities age-friendly is one of the most effective local policy approaches for responding to demographic ageing.

According to WHO:

The physical and social environments are key determinants of whether people can remain healthy, independent and autonomous long into their old age.

Older persons play a crucial role in their communities – they engage in paid or volunteering work, transmit experience and knowledge, and help their families with caring responsibilities. These contributions can only be ensured if they enjoy good health and if societies address their needs. The WHO Age-friendly Environments Programme is an international effort to address the environmental and social factors that contribute to active and healthy ageing. The Programme helps cities and communities become more supportive of older people by addressing their needs across eight dimensions: the built environment, transport, housing, social participation, respect and social inclusion, civic participation and employment, communication, and community support and health services.

This World Health Organisation initiative appears to provide an international network of good practice in these areas and opportunities to connect the growing number of places interested in dementia-friendly communities to this work. For example, it is argued that domestically here in Manchester, long-term involvement of older people in planning the development of the city at urban and neighbourhood levels has improved the physical and environmental access for older people, raising their confidence and empowering them to become involved in decision-making.

Social inclusion is becoming, of course, increasingly achievable through online social networks. Shirley Ayres (2013) argues in a ‘provocation paper’ for Nominet that social exclusion, loneliness, managing health and disabilities, and unemployment are big issues for society generally. The problems for older people can be exacerbated by ill health, significant life changes such as retirement and transitions – which may require moving to supported living – and the death of partners and close friends. Retaining a sense of worth and value, keeping connected to family and friends, and continuing to contribute to society are important considerations in addressing social inclusion.

What is a “dementia friendly community”?

The definition of the word ‘community’ itself is problematic and in this paper we have used it both thematically (e.g. ethnic or spiritual group, specific interest group, club or society) and geographically to reflect the various domains
of people’s lives. People with dementia in this project and in others that members of AESOP Consortium (an organisation that advises local health and social care systems on reform) have been involved with (Local Government Association, 2012) have described a dementia-friendly community as one that enables them to:

  • find their way around and feel safe in their locality/community/city;
  • access the local facilities that they are used to (such as banks, shops, cafés, cinemas and post offices, as well as health and social care services);
  • maintain their social networks so they feel they still belong in the community. 

Furthermore, a society or community that acts consciously to ensure that people with dementia (along with all its citizens) are respected, empowered, engaged and embraced into the whole is one that can claim to be, or is becoming, a dementia-friendly community. We have reflected that there are similar movements for communities currently to become generally more ‘age-friendly’, just as more recently they consciously became more ‘child-friendly’ and ‘wheelchair-friendly’. As mentioned in chapter 16, dementia comes within scope of the Equality Act [2010], and this therefore is an important legal consideration now. 

Communities that aspire to become dementia-friendly are likely also to be those that constantly strive to build social capital and community capacity for all their local populations of residents, workers and visitors and, in doing so, value the contribution that each makes. This may be summarised by the phrase ‘an assets-based approach’, that is, one that builds on what people can still do, as opposed to a ‘deficit-model’ that focuses on what people can no longer do and somehow ‘reduces’ them because they cannot contribute to society more fully. Appreciating the whole person – in line with Kitwood’s (1997) development of the notion of personhood – and their valuable individual contribution to the “citizenry” of a place, community or society is
an aim of this project and of the whole of Joseph Rowntree Foundation’s programme of work on dementia and society. Community development progresses this aim; civic engagement and increased social capital are its outputs. Mutual gain for everyone is the outcome.

In Europe, Bruges is leading the way in an expanding movement of towns and cities that are championing the dementia-friendly approach, which include Nantes in France and Ansbach in Germany. Bruges’ knotted red handkerchief logo signifying “dementievriendelijkBrugge” (“dementia-friendly Bruges”) is being taken up by other organisations and countries and they welcome others using the logo too, to increase its chances of becoming a universally recognisable emblem.

Where did the concept of “dementia friendly communities”come from?

Growing awareness of the demographic changes in the population as the proportion of older people and the prevalence of dementia increase has prompted research and policy development in both age-friendly and dementia-friendly communities. 
In 2011, the Department of Health convened a ‘Think Tank’ of experts, including people with dementia and family carers, to explore the concept of “dementia-capable communities”. In preparation it commissioned Innovations in Dementia to work with people with dementia to find out what makes a good community for people with dementia to live in and what can be done to make this happen (“Dementia Capable Communities” from “Innovations in Dementia”).

They found that the things that make the most difference are:

  • the physical environment;
  • local facilities;
  • support services;
  • social networks;
  • local groups.

People with dementia suggested that things could be made better by:

  • increasing people’s awareness of dementia;
  • having more local groups for people with dementia and their carers;
  • providing more information, and more accessible information, about local services and facilities;
  • making local facilities more accessible for people with dementia.

Why encourage ‘dementia friendly communities’?

1. The growing numbers of people with dementia

All statutory agencies should be familiar with the public health and demographic changes occurring over the next generation, including a doubling of the numbers of people with dementia over the next 30 years and a shrinking of the working population to support those in later life. By 2019, 38 percent of the population will be aged over 50, and by 2029 this will have risen to 40 percent (Audit Commission, 2008).

2. The economic arguments

In the U.K., the economic climate had
driven significant cuts in public sector spending that have impacted on commissioners’ abilities to fund services adequately or to invest in future service provision. It has also unfortunately coincided with the formation of different health commissioning arrangements; the Clinical Commissioning Groups (CCGs) and the Health and Wellbeing Boards, both still in their transitional infancy, are too new to have had much impact yet. Arguably, the growing elderly population is a source of spending power that has been overlooked in the past in favour of younger people with apparently more cash to spend.

 3. The value of independence and interdependence

The people we met told us that the most distressing part of their illness is that, after a lifetime of autonomy and self-determination, they find themselves having to rely increasingly on others. Even when they recognise that they need help, they are sensitive to
the complexity of nuance and understanding which can be felt on both sides.

4. The wish to remain connected to communities

Highest on the list of difficulties for people with dementia are the everyday community activities that everyone else takes for granted, such as withdrawing money at the bank, paying bills, shopping and using public transport. Trying to carry on daily life as before becomes more difficult and problematic for people. As a result they start to feel disconnected from their old groups, friends, activities and places.

 5. The interconnectedness of community life

Research and anecdotal reports of people’s personal accounts converge on the notion that receiving a diagnosis of dementia is a major life event. Fear and ignorance of dementia among family and friends, as well as the general population, may mean
that others respond negatively. Many report, in addition, reveal a necessity to make new friends, commonly from the dementia community, as they begin to lose friends and connections in their old walks of life.

 6. The need to create inclusive local communities

Older people are fellow citizens who should be able to participate in local communities and benefit from universal services to the same extent as other age groups. Scrutinising local mainstream and universal services through an age-proofing lens benefits not only older people but also many other groups – younger people, families with children, wheelchair users and other disabled groups (Audit Commission, 2008). Older people should have a stake in how universal services such as transport, parks and gardens, refuse collection and leisure services are planned and organised. Finally, through better use of space and the increased use of technology, more older people are able to participate more fully in society. The Independent featured in its reporting the impact of ageing on city life in the future, signalling the growth of environmental gerontology.


Why involve individuals with dementia in the design of ‘dementia friendly communities’?

The Local Government Association and ‘Innovations in dementia’ have explained why it is so essential to listen to the views of those individuals with dementia.

The idea of making our communities better places to live for people with dementia is something which engages the enthusiasm and interest of all sorts of people. Traders, leisure companies, transport providers, planners, service providers, health and social care organisations, charities are all potentially affected; all have a role to play in forming a vision about what a dementia-friendly community should look like.

The most important stakeholders in this process of course are people with dementia, and those who care for and support them.

“Nothing about us without us” is a slogan which carries great resonance for disability rights campaigners – and is one which is increasingly being articulated by people with dementia as well. The voices of people with dementia and their carers should be at the start and the heart of the process of creating dementia-friendly communities.


What do individuals with dementia appear to want from ‘dementia friendly communities’?

The Local Government Association and ‘Innovations in dementia’ have explained that it is important to listen to the expectations of individuals with dementia in formulating a policy on dementia-friendly communities.

Their findings are shown below.

“People told us about the things which make a difference in a dementia-capable community:

  • the physical environment;
  • local facilities;
  • support services;
  • social networks;
  • local groups.

“People told us that they kept in touch with their local communities”:

  • through local groups;
  • through the use of local facilities;
  • through walking;
  • through the use of support services.

“People told us they had stopped doing some things in their community because: their dementia had progressed and they were worried about their ability to cope they were concerned that people didn’t understand or know about dementia.”

“People told us that they would like to be able to:

  • pursue hobbies and interests;
  • simply go out more;
  • make more use of local facilities;
  • help others in their community by volunteering.”

“People told us that one-to-one informal support was the key to helping them do these things. 
People told us that a community could become more ‘dementia-capable’ by:

  • increasing its awareness of dementia;
  • supporting local groups for people with dementia and carers’
  • providing more information, and more accessible information about local services and facilities;
  • thinking about how local mainstream services and facilities can be made more accessible for people with dementia.”

The Four Cornerstones Model

Crampton, Dean, and Eley (and the Joseph Rowntree Foundation) in a report on building a dementia-friendly community in York present an elegant ‘four cornerstone’ model.


Their analysis of previous and parallel work, supported by our findings in York, led us to propose a model for realising a dementia-friendly community. With the voices of people at the heart of the process, it is argued that communities need to consider four ‘cornerstones’ to test the extent of their dementia friendliness. These are:

Place – how do the physical environment, housing, neighbourhood and transport support people with dementia?

People – how do carers, families, friends, neighbours, health and social care professionals (especially GPs) and the wider community respond to and support people with dementia?

Resources – are there sufficient services and facilities for people with dementia and are these appropriate to their needs and supportive of their capabilities? How well can people use the ordinary resources of the community?

Networks – do those who support people with dementia communicate, collaborate and plan together sufficiently well to provide the best support and to use people’s own ‘assets’ well?


The “socio-economic position”

The “socio economic position” (SEP) refers to the position of individuals in the hierarchy and is inherently unequal, shaping access to resources and every aspect of experience in the home, neighbourhood and workplace (Krieger 2001a; 2001b; Graham 2004; Regidor 2006). Different dimensions of SEP (education, income, occupation, prestige) may influence health through different pathways and so may be more or less relevant to different health outcomes. It is the extent to which SEP involves exposure to psychological (in addition to material) risks and buffers that is of special interest from
a mental health perspective. SEP structures individual and collective experiences of dominance, hierarchy, isolation, support and inclusion. Social position also influences constructs like identity and social status, which impact on wellbeing, for example, through the effects of low self esteem, shame, disrespect and ‘invidious comparison’ (Rogers and Pilgrim 2005; de Botton, 2004). Sen has previously argued that shame and humiliation are key social dimensions of absolute poverty and that the ‘ability to go about without shame’ is a basic capability or freedom (Sen, cited in Zavaleta 2007).

The use of the term psycho-social is important because it highlights the psychological/emotional/ cognitive impact of social factors, the effects of which need to be distinguished from material factors. For example, unemployment that leads to loss of income is not psycho-social, whereas
the loss of self esteem that accompanies unemployment is (Martikainen et al., 2002). Individual psychological resources, for example, confidence, self-efficacy, optimism and connectedness appear embedded within social structures: our position in relation to others at work, at home, and in public spaces. Because social position influences emotion, cognition and behaviour, it is an ongoing challenge to separate out contextual effects (Singh-Manoux and Marmot 2005). Context was first introduced in chapter 9.

An example of making a community “dementia friendly”

Hampshire County Council, ‘Innovations in Dementia’ and the Local Government Association provide a very good example of steps through which a community can be made more ‘dementia friendly’. They cite that memory problems make life difficult, and suggest the following:

  • people who understand about memory problems – this can be people in shops, bus drivers, friends and family or anyone you come into contact with;
  • clear signposting, so people know where they are going and where things are;
  • clearly-written information on things like bus timetables or leaflets about services;
  • being able to spend time with other people in a similar situation;
  • having someone to go with.


The benefits of “resilient communities”

A wide range of research demonstrates the health significance of social relationships and both formal and informal social systems as mediators of psychosocial stress resulting, for example, from inequality or economic transition. The relationship is not always clear cut (De Silva et al., 2005, 2007). There are different forms of community cohesion with different effects, in low income countries, for example, or for particular groups where strongly bonded communities may exclude minorities.

Nevertheless, communities with high levels of social capital, indicated by norms of trust, reciprocity, and participation, have advantages for the mental health of individuals, and these characteristics have also been seen as indicators of the mental health or wellbeing of a community (Morgan and Swann 2004; Lehtinen et al., 2005; McKenzie and Harpham 2006). The mental health of communities can be both a risk factor (e.g. the concept of social recession) and a protective factor (e.g. the application of herd immunity to mental health) (Stewart-Brown 2003). Hopelessness and a difficulty in imagining solutions, which are also risk factors for suicidal behaviour, are influenced by both neighbourhood culture and the physical environment.

For individuals, social participation and social support in particular, are associated with reduced risk of common mental health problems and better self reported health. Social isolation is an important risk factor for both deteriorating mental health and suicide (Pevalin, and Rose 2003; Social Exclusion Unit 2004). The key question is, perhaps, the extent to which social capital mediates the effects of material deprivation. Many studies have found that social support and social participation do not mediate these effects (Mohan et al. 2004; Morgan and Swann 2004). A recent ecological study of 23 high and low income countries found no significant association between trust and adult mortality, life expectancy and infant mortality. Rather the results supported the importance of both absolute and relative income distribution (Lindstrom and Lindstrom 2006).

This does not mean that neighbourhood effects are insignificant: we know that indicators of social fragmentation and conflict in communities, as well as high levels of neighbourhood problems influence outcomes independently of socio-economic status (Agyemang et al. 2007; Steptoe
 and Feldman 2001). Mistrust and powerlessness amplify the effect of neighbourhood disorder, making where you live as important for health and wellbeing as personal circumstances (Krueger et al., 2004).

Socially disorganised areas provide a dangerous mix: large numbers of potential offenders who have few opportunities other than crime, many potential victims, and few social organisations or individuals who are capable of protecting others from violence (Krueger et al., 2004). Area level effects may be particularly significant for some causes of mortality: in Scotland, for example, increases in inequalities in mortality are driven by increases in death rates at a young age in areas of high deprivation, for example for liver disease, suicide and assault and mental and behavioural disorders due to drugs (Leyland, 2007).

It may be that negative symptoms of low morale and psycho-social vulnerability in communities, including anxiety, paranoia, aggression, hostility, withdrawal and retreat, have a greater power than protective factors, or, as we saw in relation to resilient places, that material resources outweigh other factors.




Dementia Action Alliance, National Dementia Declaration.

RSA: Connected communities

Department of Health: The Dementia Challenge Dementia friendly communities

WHO Global network of age-friendly cities and communities



Disability Discrimination Act [2005]

Equalities Act [2010]



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Resilience in the midst of austerity: a challenge for dementia wellbeing

In Prof. Felicia Huppert’s latest chapter entitled, “The state of well-being science: concepts, measures, interventions and policie”s, to appear in Interventions and Policies to Enhance Well-being (Huppert, F.A. and Cooper, C.L. (eds.) ), Prof. Huppert re-establishes the perspective that it is possible to demonstrate wellbeing even in the presence of a label of a clinical diagnosis. This aligns itself  nicely with the argument which I have been advancing, that it is the possible to enhance the wellbeing of an individual with dementia through careful consideration of his or environment. For example, one could attempt to make the home or ward better designed, attempt to involve the individual with leisure activities or general activities (such as reminiscence therapy), seek to encourage adoption of assistive technologies or assisted-living technologies, or try to encourage more social activities including participation in a wider community. However, Huppert and So (2013), to establish what components comprise well-being, have examined carefully the internationally agreed criteria for the common mental disorders (as defined in DSM-IV and ICD-10) and for each symptom, listed the opposite characteristic. This resulted in a list of ten features which represent positive mental health or ‘flourishing’. These are: competence, emotional stability, engagement, meaning, optimism, positive emotion, positive relationships, resilience, self esteem, vitality.

Just as symptoms of mental illness are combined in specific ways to provide an operational definition of each of the common mental disorders, they proposed that positive features could be combined in a specific way to provide an operational definition of flourishing. The diagnostic criteria for a mental disorder do not require that all the symptoms be present; likewise, the operational definitions of flourishing (Keyes, 2002) do not require that all the features of positive feeling and functioning be present. There is currently a relative paucity of literature on the efficacy of psychological techniques such as “mindfulness” in enhancing wellbeing in individuals with dementia, but it is possible that innovative ways of improving any aspects of the multi-dimensional construct could be developed through such a technique. Among the reported benefits of mindfulness training in other populations, which are related to subjective well-being, are: reductions in stress and anxiety, increased positive mood, improved sleep quality, better emotion regulations, greater bodily awareness and increased vitality, and greater empathy (Huppert, in press.)

Clearly, ignoring the economic climate of an individual with dementia is not going to be possible, although I have thus far successfully managed to avoid such a discussion. The data reported in Huppert and So (2013) are from 2006/07, two years before the severe economic recession from which many countries have since suffered. Huppert (2013) argues that it would be very interesting to know if the recession has changed the prevalence of flourishing or its component features within and between countries, and the extent to which country rankings of the prevalence of flourishing may have altered. Relatively recent data from the Gallup World Poll show almost no impact of the economics crisis on subjective well-being in the UK (Crabtree, 2010). However, one clearly has to acknowledge the ‘social determinants of health”, famously described by Marmot (2012) as: “Mental health and mental illness are profoundly affected by the social determinants of health; psychosocial processes are important pathways by which the social environment … impact [s] on … physical and mental health … ”  Indeed McKee and colleagues (McKee et al., 2012) make a constructive but profoundly depressing link between illbeing and austerity:

“For many months, the political and financial aspects of the crisis have filled the headlines. However, behind those headlines, there are many individual human stories that remain untold. They include people with chronic diseases unable to access lifesustaining medicines, persons with rare diseases who are losing income support and forced to care for themselves, and those whose hopes of a better life in the future have been dashed see no alternative but to commit suicide. So far, the discussion has been limited to finance ministers and their counterparts in the international financial institutions. Health ministers have failed to get a seat at the table. As a consequence, the impact on the health and wellbeing of ordinary people was barely considered until they made their feelings clear at the ballot box.”

More optimistically, Huppert and So (2011) argue that this parcellation of the positive wellbeing multidimensional construct may be useful for developing targeted interventions:

“If a population group is high on some features of well-being such as positive relationships, but low on others such as engagement or resilience, it is clear where interventions should be targeted.”

resilience ability


Psychosocial resilience is a dimension of wellbeing which perhaps will be worth considering in detail, of how an individual and immediates might be able to cope and adapt to future adversity. This indeed is reflected in a definition of psychosocial resilience as provided by Williams and Kemp (in press) as “a person’s capacity for adapting psychologically, emotionally and physically reasonably well and without lasting detriment to self, relationships or personal development in the face of adversity, threat or challenge.”  Reaching a logical conclusion, whilst there might be aspects of life which encourage illbeing, a reasonable strategy might be to strengthen components which can help to improve specific aspects of wellbeing. This would not have been possible had it not been for the work of Prof. Felicia Huppert and colleagues emphasising that wellbeing is a multidimensional construct, in the same way that it is widely acknowledged that it is unhelpful to think of dementia as a unitary diagnosis.

The Department of Health (2012) policy document, “No health without mental health: implementation framework” very nicely produces a backdrop for emphasising the importance of wellbeing in dementia. Their core principles are set out “a clear and compelling vision, centred around six objectives: more people will have good mental health, more people with mental health problems will recover, more people with mental health problems will have good physical health, more people will have a positive experience of care and support, fewer people will suffer avoidable harm, and fewer people will experience stigma and discrimination“.

Notwithstanding this, it appears that the analysis of ‘living well in dementia’ is now benefiting from an approach which has led to an appreciation that no dementia is clinically the same; nobody’s wellbeing is exactly the same, because of the way in which all the contributing parts have come together. This approach is elegant, holds incredible promise for the future.






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Huppert, F. (in press) The state of well-being science: concepts, measures, interventions and policies, to appear in Huppert, F.A. and Cooper, C.L. (eds.) Interventions and Policies to Enhance Well-being, Oxford: Wiley-Blackwell.

Huppert, F.A. and So, T.T.C. (2013) Flourishing across Europe: application of a new conceptual framework for defining well-being, Social Indicators Research, 110(3), pp 837-861.

Keyes, C. L. M., (2002) The mental health continuum: From languishing to flourishing in life, Journal of Health and Social Behavior, 43, 207– 222.

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Williams, R, and Kemp, V. (in press.) Psychosocial resilience, psychosocial care and forensic mental healthcare. In: Bailey S, Tarbuck P. (eds.) Adolescence Forensic Psychiatry, Cambridge: Cambridge University Press.

“What’s in it for me?” The importance of the ‘built environment’ for living well with dementia

built environments

Strangely enough, with the focus of drugs, drugs, and yet more drugs, there’s been relatively scant attention for the environment in which a person living with dementia finds himself or herself in.

Improving wellbeing for a person is essentially about understanding the past and present of that person, and building on that person’s beliefs, concerns and expectations about the future. But the idea that you can ignore the environment is simply science-fiction.

The design of care homes maters. The design of hospital wards matter. The design of towns including pavings and signs matters.

Such an approach sounds ambitious and joined up, but not impossible. There’s been a long and proud history in England of understanding the social determinants of health, including housing.

The Attlee Government also extended the powers of local authorities to requisition houses and parts of houses, and made the acquisition of land less difficult than before. In 1949, local authorities were empowered to provide people suffering from poor health with public housing at subsidised rents. That very same year, unemployment, sickness and maternity benefits were exempted from tax.

Recent research suggests that wellbeing in later life is closely related to the physical environment, which is an important mediator of ageing experiences and opportunities. The physical character of the built environments or neighbourhood in particular seems to have a significant impact on the mobility, independence and quality of life of older people living in the local community.

According to a “Greenspace Scotland” report from 2008, “Trust for Nature” is a community-based conservation organisation that focuses on the protection of private land of high conservation value in the state of Victoria, Australia.

In recent research by Inclusive Design for Getting Outdoors (ID’GO), 15% of questionnaire respondents (a large sample, nearing 1000 in sample size) had stumbled or fallen outside within the last 12 months. The real figure is likely to be higher, since past-year falls are often under-reported. Many of the environmental risk factors associated with outdoor falls appear to be preventable through better design and maintenance; factors including pavement quality, dilapidation and kerb height.

Abstract experiential qualities such as perceptions of ‘safety’ and ‘attractiveness’ have been identified as important factors in stated preferences for parks and green spaces and there has been much written over many years on landscape aesthetics  and how this might influence preference and use.

By contrast with research on environment and health, arguably this is a domain rich in theoretical concepts for the mechanisms behind engagement with the environment but poor in terms of tools to measure the detailed spatial and structural qualities of different landscapes in relation to how people actually use and experience them. For landscape designers, this is of crucial interest. There have been, historically, attempts to develop guidance based on general principles, but few tools actually to measure the dynamic spatial experience in practice.

A built environment for all ages is conceptualised as one that has been designed so that people can access and enjoy it over the course of their lifetime, regardless of ability or circumstance. Such environments are said to be designed “inclusively”. The I’DGO (Inclusive Design for Getting Outdoors) consortium was launched in 2004 to investigate how outdoor environments affect older people’s wellbeing and to identify what aspects of design help or hinder older people in using the outdoors. Their focus is on identifying the most effective ways of shaping outdoor environments inclusively. They support the needs and preferences of older people and disabled people, always seeking to improve their independence and overall quality of life.

I’DGO was set up to explore the ways in which being able to get out into one’s local neighbourhood impacts on older people’s wellbeing and what barriers there are to achieving this, day-to-day. The project asked the crucial question: why do we need a built environment for all ages? The first phase of research, which finished in 2006, involved over 770 people aged 65 or above. Participants were asked about their wellbeing and quality of life, how often and why they went outdoors and what features of their local neighbourhood helped or hindered their activity. Researchers also physically audited 200 residential neighbourhoods to look for barriers and benefits to getting around as a pedestrian.

The I’DGO research found quickly that older people went outdoors very frequently to socialise, exercise, get fresh air and experience nature. If they lived in a supportive environment – one that made it easy and enjoyable for them to get outdoors – they were more likely to be physically active, healthy and satisfied with life. Walking was by far the most common way that people spent their time outdoors, whether for recreation or transport (‘getting from A to B’). Participants in the I’DGO study who lived within 10 minutes’walk of an open space were twice as likely to achieve the recommended levels of healthy walking (2.5 hours/week) as those whose nearest open space was not local.

A major research goal has been to examine the specific attribute of neighbourhood streets – tactile paving at steps and crossings – and asks how this affects the biomechanics of walking and risk of falling in older people (the project run by the SURFACE Inclusive Design Research Centre and their colleagues in Health, Sport and Rehabilitation Sciences at the University of Salford). The benefits of tactile paving for blind and visually impaired people have been well established yet the system is not without its issues.

Tactile paving is not a policy area without its concerns, and a few in particular emerge from a report by the UK Health and Safety Executive. This report suggested that there is a need better to understand the extent and implications of incorrectly designed and laid tactile paving, and the toe clearance of an individual in negotiating paving ‘blisters’ and potential slip hazards. These factors appear to be crucial to older people, since many of the first phase ID’GO interviewees expressed concerns about falling
or feeling unstable on tactile surfaces and fall-related injuries are associated with loss of independence, morbidity and death in older people.

If we are to understand what qualities of the environment are important to an ability of individuals to ‘live well’, we need perhaps to acknowledge the diversity that exists in people’s capabilities, experience, desires and needs. This overall is a huge challenge for designers; the response conventionally has been to look for factors in the environment that matter to most people, or to a defined group of people, and to address those factors as if they were equally important. Yet for any individual, different qualities and elements in the environment may be a matter of indifference (e.g. certain colours if you are visually impaired) or vitally important (e.g. proximity of an accessible toilet if you have a weak bladder).

Such an approach builds on the concept of “affordance” and the reciprocal relationship between perceiver and environment. The concept of affordance links environment and human behaviour, or opportunities for action, and is therefore of particular interest in understanding how the environment might encourage or support people to be more active—a primary goal of public health policy. This is an insight of key relevance to investigating human behaviour in the landscape. As Appleton has put it, more succinctly, for any individual considering their landscape context, it helps us understand “what’s in it for me?” (Appleton, 1975).

Key text

Appleton, J. (1975) The experience of landscape, New York, NY: John Wiley.