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Living better with dementia: a “Year of Care” for dementia?
This is an extract from my book ‘Living better with dementia’ by me (Forewords by Prof Alistair Burns, Kate Swaffer, Chris Mason and Dr Peter Gordon), to be published by Jessica Kinglsey Publishers 2015. It comes from the chapter on whole person care (chapter 10).
Acute medicine is ideally suited to the medical model where you make a diagnosis on the basis of investigations, and then you immediately implement a management plan. There should of course be prompt action on acute situations for people living with dementia, but this is rather different to the usual needs of a person trying to live better with dementia. A person with a long term condition “lives with the condition day by day for their whole life and it is the things they do or don’t do that will make the difference to their quality of life and the long term outcomes they will experience” (Royal College of General Practitioners, 2011).
Shirley Ayres (2014) argues in her article entitled “The long term care revolution: a provocation paper” that “people in later life offer wisdom, experience, perspective and a wide range of skill sets and capacities”, reflecting that that long term institutional care is not the correct setting for them. This argument also holds true, perhaps, for people living well with advanced dementia.
The burning question still remains, as it was in the genesis of the first English dementia strategy, how a framework of post-diagnostic support for people living with dementia could best take place in England. I have already discussed earlier in chapter 10 of my book the policy of ‘whole person care’, and the critical rôle of social care practitioners and clinical nursing specialists in a multidisciplinary approach. It is also worth noting that the “year of care” initiative has seen some crystallisation of the approach for living well. It offers a framework that supports delivery of the Domain 2 of the NHS Outcomes Framework ‘Enhancing quality of life for people with long-term conditions’. Through this, it is hoped that ‘far more people will have developed the knowledge, skills and confidence to manage their own health’, but there are clear implications for the implementation of whole person care, namely, “care which feels more joined-up to the users of services”, and “care [which] centres on the person as a whole, rather than on specific conditions” (Year of Care website, accessed December 2014).
There will always be the criticism that self management, rather than having the prime goal of encouraging health and wellbeing, is meant as a ‘cover’ for essential services being cut. Benefits of “self management” which have previously been proposed are, nonetheless, proposed in Box 1.
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Box 1. Benefits of ‘self management’ [Source: Royal College of General Practitioners (Clinical Innovation and Research Centre) (2011) (authors: Nigel Mathers, Sue Roberts, Isabel Hodkinson and Brian Karet) Care Planning: Improving the Lives of People with Long Term Conditions]
When people self care and are supported to do this, they are more likely to:
- experience better health and well-being
- reduce the perceived severity of their symptoms, including pain
- improve medicines compliance
- prevent the need for emergency health and social services
- prevent unnecessary hospital admissions
- have better planned and co-ordinated care
- remain in their own home
- have greater confidence and a sense of control
- have better mental health and less depression
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Indeed, this policy agenda has been slowly ‘cooking’ for about year. For example, nearly a decade ago, Department of Health (2005) issued its document “Supporting People and integration with Long Term Conditions – An NHS and Social Care Model to support local innovation: Improving Care Improving Lives” had proposed a number of key priority areas, namely:
- To embed into local health and social care communities an effective, systematic approach to the care and management of patients with a long term condition.
- To reduce the reliance on secondary care services and increase the provision of care in a primary, community or home environment.
- Patients with long term conditions need high-quality care personalised to meet their individual requirements.
This follows on from an elegant analysis from one of Derek Wanless’ numerous reports, this time “Securing our Future Health: Taking a Long-Term View” from 2002. This one envisages one scenario for the future involving full public engagement.
Wanless (2002) describes this as,
“levels of public engagement in relation to their health are high. Life expectancy increases go beyond current forecasts, health status improves dramatically and people are confident in the health system and demand high quality care. The health service is responsive with high rates of technology uptake, particularly in relation to disease prevention. Use of resources is more efficient.”
(Derek Wanless, Public Enquiry Unit (2002))
It has become increasingly acknowledged that under this approach, the “care plan” is pivotal. The care plan “should set out the patient’s agreed health objectives and care needs, including what the individual can contribute towards their own self care, and what each professional and agency will do to help them meet these. It will include preventive and health promotion actions (such as avoiding accidents, reducing infection or nutrition).” (Department of Health, 2005).
In a pamphlet from the King’s Fund (2013), entitled “Delivering better services for people with long-term conditions”, the authors, Angela Coulter, Sue Roberts and Anna Dixon describe a co-ordinated service delivery model – the ‘house of care’ – that incorporates learning from a number of sites in England that have been working to achieve these goals.
They describe that the “house of care” model differs from others in two important ways:
- it encompasses all people with long-term conditions, not just those with a single disease or in high-risk groups;
- and it assumes an active role for patients, with collaborative personalised care planning at its heart.
This model is a system innovation, as applied to dementia, as it proposes a shift in power from professionals to persons living with dementia play an active part in determining their own care and support needs. Such an approach, it is hoped, would respect autonomy dignity, promote independence and offer maximum choice and control for need help from the health and care systems. The philosophy of “whole person care” moves the NHS towards an integrated health and care system, which is concerned about individuals during health as well as disease, a critical time when the coordination between the NHS and social care could not possibly be worse.
Self care is about individuals, families and communities taking responsibility for their own health and wellbeing. It includes actions people take in order to stay fit and maintain good physical and mental health, meet their social and psychological needs, prevent illness or accidents and care more effectively for minor ailments and long term conditions.
Both dementia and diabetes mellitus can be viewed as disabilities, and each may be a co-morbidity of the other. Sinclair and colleagues (2014) have outlined the key steps in an integrated care pathway for both elements of this clinical relationship, produced guidance on identifying each condition, dealt with the potentially risky issue of hypoglycaemia, and have outlined important competencies required of healthcare workers in both medical/diabetes and mental health settings to enhance clinical care. In the overall construct, people living with a long term condition, disability or a minor illness, as well as carers, can benefit enormously from being supported to self care.
The ‘Common Core Principles to Support Self Care’ aim to help health and social care services give people control over, and responsibility for, their own health and well-being, working in partnership with health and social care professionals (Skills for Care/Skills for Health, 2007) Seven principles have been elaborated. These are shown in Box 2 below.
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Box 2. Seven principles to support ‘self care’ [Source: Skills for Care/Skills for Health (2007)“Common core principles to support self care: a guide to support implementation” http://www.skillsforcare.org.uk/document-library/skills/self-care/commoncoreprinciples.pdf]
- Ensure individuals are able to make informed choices to manage their self care needs
- Communicate effectively to enable individuals to assess their needs, and develop and gain confidence to self care
- Support and enable individuals to access appropriate information to manage their self care needs
- Support and enable individuals to develop skills in self care
- Support and enable individuals to use technology to support self care
- Advise individuals how to access support networks and participate in the planning, development and evaluation of services
- Support and enable risk management and risk taking to maximise independence and choice.
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The “NICE quality standard for supporting people to live well with dementia: information for the public” is intended to support people to live well with dementia. It sets out how high-quality social care services should be organised and what high-quality social care should include, so that the best support can be offered to people with dementia using social care services in England (NICE, 2013). This has provided a very useful yardstick against which services which purport to improve the quality of life of people with dementia can be judged.
It is, further, reported that the ‘Year of Care’ (YOC) programme was successful in implementing the key features of care planning in diabetes, for example. The YOC Programme has two components, according to ‘Diabetes UK’ (2011). Firstly, it enhances the routine biomedical surveillance and ‘QOF review’ with a collaborative consultation, based on shared decision making and self management support, via care planning; and then it ensures there is a choice of local services people need to support the actions they want to take to improve their health, wellbeing and health outcomes.
People are involved in the care of their diabetes in quite a new way and enjoying it. People are setting personal goals and action plans relevant to their everyday life; take up of education programmes has improved and in very disadvantaged populations, poor attendance rates, biomedical outcomes and service use are also improving.
(Royal College of General Practitioners, 2011)
It is likely that the health and care sectors will seek to engineer the ‘best’ solutions on offer for post diagnostic support, within a framework of ‘whole person care’.
Such solutions might include ‘dementia advisers’, ‘clinical nursing specialists’, or ‘a year of care’. The solutions most appropriate for “living better with dementia” might be drawn, for example, from best practice in other long term conditions, such as diabetes or cancer. The quality of local commissioning, undoubtedly, is going to be pivotal in this. It will be a sensitive policy balance to make the argument that responsibilities of the State are not shunted across to the third sector in an unaccountable or unorthodox manner. But many will argue that there is valid and crucial role for the third sector to play. Actually, the policy imperative for this could not be clearer – many persons living well with dementia report not expecting to see a professional until the end of life phase, having seen one for the initial diagnosis. This is clearly not on if policy truly wishes to promote living better with dementia in England.
References
Department of Health (2005) “Supporting People and integration with Long Term Conditions – An NHS and Social Care Model to support local innovation: Improving Care Improving Lives”, accessed 6 December 2014,available at: http://webarchive.nationalarchives.gov.uk/+/www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/Browsable/DH_4965951
Diabetes (UK) “Year of Care: Report of findings from the pilot programme” (date June 2011), accessed 6 December 2014,available at: http://www.diabetes.org.uk/upload/Professionals/Year%20of%20Care/YOC_Report.pdf
Innovate UK (2014) The long term care revolution: a provocation paper. (author Shirley Ayres), accessed 6 December 2014,available at: https://connect.innovateuk.org/documents/15494238/0/LTCRprovocationPaper.pdf/45cf1947-c477-4f21-913e-4eb3f9061aa0
King’s Fund (2013) (authors: Angela Coulter, Sue Roberts and Anna Dixon, October 13) “Delivering better services for people with long-term conditions”, accessed 6 December 2014,available at: http://www.kingsfund.org.uk/sites/files/kf/field/field_publication_file/delivering-better-services-for-people-with-long-term-conditions.pdf
NICE quality standard 30 April 2013 NICE quality standard for supporting people to live well with dementia: information for the public, accessed 6 December 2014,available at: https://www.nice.org.uk/guidance/qs30
“Policy: A Year of Care”, accessed 6 December 2014,available at: http://www.yearofcare.co.uk/policy-0
Public Enquiry Unit (2002) “Securing our Future Health: Taking a Long-Term View. Final Report” (author Derek Wanless), accessed 6 December 2014, available at: http://si.easp.es/derechosciudadania/wp-content/uploads/2009/10/4.Informe-Wanless.pdf
Royal College of General Practitioners (Clinical Innovation and Research Centre) (2011) (authors: Nigel Mathers, Sue Roberts, Isabel Hodkinson and Brian Karet) Care Planning: Improving the Lives of People with Long Term Conditions, accessed 6 December 2014, available at: http://www.impressresp.com/index.php?option=com_docman&task=doc_view&gid=75&Itemid=70
Sinclair AJ, Hillson R, Bayer AJ; National Expert Working Group. Diabetes and dementia in older people: a Best Clinical Practice Statement by a multidisciplinary National Expert Working Group. Diabet Med. 2014 Sep;31(9):1024-31. doi: 10.1111/dme.12467.
Skills for Care/Skills for Health (2007) “Common core principles to support self care: a guide to support implementation”, accessed 6 December 2014,available at: http://www.skillsforcare.org.uk/document-library/skills/self-care/commoncoreprinciples.pdf
Trivialising dementia – too much inappropriate rocking of the boat?
When I wrote my highly successful book, “Living well with dementia”, using the phrase deliberately from the 2009 English dementia strategy document for England, I never knew the phrase was being bastardised so much for often very trivial initiatives in dementia.
On the other hand, I had huge delight in seeing its immediate relevance to a carers’ support group I went to last week.
I feel deeply hurt that the serious issues in my book, such as advocacy for mental capacity, the presentation of the cognitive neurology of the dementias, or the use of ambient-assisted technology have not been widely discussed amongst the wider community.
In that, I feel the book has failed.
I welcome proposals for the next Government to maximise money into actual service, and to re-establish health funding in line with other comparator countries.
Commissioning in dementia is now not based on what is best for the person for the person with dementia, but what is best for your Twitter commissioner friends.
I look forward to the Health and Wellbeing Boards playing a pivotal rôle in establishing some sort of normality for what commissioning in living well with dementia might be as a value-based outcome.
The strangehold of “shiny”, “off the shelf” “innovative packages”, in the drive for the current Government to ‘liberalise’ the financial market in dementia has acted for a cover for disturbing, unacceptable cuts in dementia service provision in the last few years.
I remember ‘boat rocking’ the first time around from the elegant work of Prof Debra Meyerson.
I do not wish to promote frontline professionals, many of whom have spent seven years at least at medical school or in their nursing training, to become lambs to the slaughter in the modern NHS and social care.
Keeping it real, we know that real frontline professionals in medicine and social care, even if they are not in a downright toxic environment requiring whistleblowing, can find it dangerous being risk appetitive.
Indeed, being risk appetitive, while great for innovation and leadership, can literally be deadly for patient safety.
The next Government has enough on its hands with enforcing care home standards and sanctioning for offences against the national minimum wage for paid carers as it is.
We have to think for a second for the vast army of paid workers in the NHS, as well as the rather well paid people who like their shiny new boxes, I feel.
The schism between the social media and what is happening at service level I think is most alarming, and perhaps symptomatic about how the health and social care services have begun to work in reality.
All too often, I am having first hand experience of busy frontline nurses being dragged in front of entrepreneurs in their local dementia economy to hear shills beginning, “I don’t have first hand experience of caring in dementia, but…”, before the hard sell.
This is tragically being reflected on the world stage too, though I do anticipate that the G7 legacy event from Japan which is looking carefully at their experience with care and support post diagnosis, next year, will be brilliant.
It is important for leaders in dementia to have authenticity.
I have severe doubts and misgivings about what gives the World Dementia Envoy the appropriate background and training in dementia for him to be in this important post.
It is all too easy for ‘thought leaders’ in corporate-like medical charities to have no formal qualifications or training in medicine, nursing, or social care, and opine nonetheless about weighty issues to do with policy.
I am concerned that the global ‘dementia friendly communities’ policy plank appears to have been straightjacketed through one charity in England, when it is patently obvious that various other charities such as the Joseph Rowntree Foundation have made a powerful contribution.
The media have largely not engaged in a discussion about living well with dementia, but engaged simply with Dementia Friends or a story arising out of that.
I am alarmed about the lack of plurality in the dementia research sector.
I think the All Party Parliamentary Group (“APPG”) for dementia have done some valuable work, but their lack of momentum on specialist nurses including Admiral nurses, spearheaded by the charity Dementia UK, seriously offends me.
I am sick of how the notion of ‘involvement’ of people with dementia has been abused in service provision mostly, although I am encouraged very much by initiatives such as from DEEP and Innovations in Dementia.
I think there have been genuine improvements in engaging people with dementia in research, through a body of work faithfully peer-reviewed in the Dementia Journal looking at heavy issues such as the meaning of real consent.
I am now going to draw the line of tokenistic involvement of people with dementia to front projects without any meaningful inclusion.
And in fairness, this tokenistic involvement is, I am aware, happening in various jurisdictions, not just England.
All too often, “co-production” has become code for ‘exploitation’ rather than ‘active partnership’.
The prevalence of dementia is actually falling in England, it is now thought.
The ‘dementia challenge’ was our challenge to making sure that we adequately safeguarded against people rent seeking from dementia since 2012.
In that, I think we have spectacularly failed.
I am overall very encouraged, however, with the success of the huge amount of work which has been done, including from the highly influential Alzheimer’s Society, and from the communitarian activism of “The Purple Angels”.
All this ‘radicalism’ has taken on a rather ugly, conformist twang.
Now is though time to ‘take stock’, as Baroness Sally Greengross, the current chair of the APPG on dementia, herself advised, as the new England dementia strategy is being drafted ahead of the completion of the current one in March 2015.
“Drop in centres”. Definitely “one to watch” in the new English dementia strategy.
Access to any sort of dementia service has become the focus of scrutiny in the English dementia strategy.
For example, NHS Bristol and Bristol City Council Health and Social Care have produced a strategy document entitled ‘Living well with dementia in Bristol’ to run 2011-2015. They helpfully provide the following table on page 32.
There is considerable interest in how much ‘support’ can be provided by the NHS and social care providers, and how much can be provided by charities and other voluntary entities.
A major faultline in policy is how the third sector can lower the barriers to entry for ‘other providers’ for dementia awareness, other than the usual suspects. There is a growing momentum that any awareness is to be welcomed, wherever it comes from, but ultimately this awareness should not be for knowledge for its own sake, but should be an application to encourage inclusivity.
And all services can be a bit rushed, especially any services, medical or legal, where the end point of funding is activity-based. But conversely what people with dementia and those closest to them, whether in an official caring rôle or otherwise, invariably mention is the need for time and patience.
“Drop-in centres” have attracted much interest of late.
They offer emotional support, companionship and practical advice to people, including individuals with dementia who wish to live well independently in the community.
They’re generally run by voluntary organisations, local councils and day centres. Drop-in centre sessions usually run for a few hours at a time, one or more times a week.
The volunteers at drop-in centres are generally there to listen and provide support to those who come along, as well as to encourage people to make friends and take part in activities that interest them. Activities are especially promoted in the NICE Quality Standard 30, a strategy document which has as its aim supporting people to live well with dementia. Activities can include things like games and quizzes, arts and crafts, exercise and relaxation classes. There might also be TV, computer and internet facilities. Some drop-in centres offer educational and life-skills workshops, on topics such as developing confidence.
Individuals who use drop-in centres often have opportunities to help make decisions about how the centre is run even, and decision-making, choice and control have become key planks of dementia whichever political party is in office.
The overall aim is to provide a friendly, relaxed and unthreatening atmosphere.
Drop-in centres support people with a very wide range of needs, including older people, young people, people with learning disabilities, deaf or blind people, refugees and asylum seekers, or People facing specific health conditions such as cancer
Many drop-in centres are also open to carers, which may include families and friends of people who have these kinds of support needs. Many people in some sort of ‘caring rôle’ do not consider themselves ‘carers’, numerous successive studies find.
Drinks and snacks are often available at drop-in centres and some also offer hot meals. Some centres can help arrange transport for people who find public transport difficult to use.
And ‘drop in’ approaches might be particularly positive for people living with dementia. Often people living with dementia find the diagnosis stigmatising, but invariably people living with dementia on receiving a diagnosis still wish to live life to the full.
There are lots of services available for people living in the community who would like companionship or support during the daytime. Day centres open for longer hours than drop-in centres and offer support to older people and adults with disabilities or mental health problems. There are lunch clubs for older people too. If you feel lonely or cut off from others in the community, or can’t leave your home very often, then you might like to benefit from “companion and befriender services” arranged through the drop-in mechanism.
‘Drop in centres’ have developed a momentum of their own in England. For example, Age UK Shropshire Telford & Wrekin have opened five Diamond Drop In Centres to support local people with dementia and memory difficulties, their families, carers and friends. Previously it was reported that carers in Faversham have access to a drop in centre in their own locality. This Kingsfield team had created the drop-in service to offer support and information for both their residents’ relatives and people in the local community who are caring for someone with dementia.
Norman McNamara, Founder of Purple Angels, announced this morning that there might be plans to launch a drop in centre in Exeter. Norman admitted to being ‘quite tearful’ at having organised a previous ‘Day Lewis – Purple Angel’ drop in centre, particularly of the busy nature of the location. But it is well known that Norman McNamara has achieved an enormous amount through a remarkable amount of personal determination, as he lives with a type of dementia called diffuse Lewy Body type. This all is a noteworthy development of a campaign which ‘thinks global acts local’. Their ‘global’ website is here.
Now it turns out that “Barchester” is in full support of the Purple Angel campaign. Norman had started this campaign in Torbay – an area with a solid reputation as a retirement destination. He began by generating awareness about dementia with local businesses and soon his iconic Purple Angel stickers started appearing in shop windows around the district to show solidarity and understanding of living with dementia
Many hope that ‘drop in centres’ will feature in the new English dementia strategy 2014-9.
