Thank you very much for attending my third book launch here in the Arlington Centre. The last book launch was in July 2015, which I co-hosted with Kate Swaffer and Beth Britton.
This third book is called ‘Enhancing health and wellbeing in dementia: a person-centred integrated care approach”, published by Jessica Kingsley Publishers on January 19th 2017. The title reflects that every person has a human right to health, and that wellbeing is a critical part of wellbeing. People are entitled to the best of care regardless of setting – for example, Dementia Care Mapping™ (DCM™ ) has been used as an observational tool which has been designed to be used within formal care settings such as care homes, nursing homes, day services and hospitals. This book is, in fact, in part dedicated to Prof Dawn Brooker. The book is also dedicated to Prof Martin Rossor, national director for dementia research, for whom I worked in 2003.
I should welcome to you to participate fully in the afternoon, which will be introduced by Lisa Rodrigues CBE.
There’s an open question for discussion at the end to which there’s no right answer. As the delegate list is a powerful mixture of persons living with dementia, carers, social workers, AHPs, managers, academics, technologists, nurses, leads, physicians, psychologists, and people who defy any sort of categorisation, to name but a few, I anticipate it will be a lively discussion. My book is intensely evidence-based but not in a way, I hope, which is off-putting to the primary audience – who are not commissioners, but persons living with dementia and carers. I certainly believe that it is the primary duty of researchers at least to think about the basic translation of research into practice. many of the interventions and service developments will ultimately rely on this.
Thankfully, there are people in care settings who are devoted passionately about the environment of care, for example helping carers identify, find solutions and create a care plan to overcome mealtime eating problems in dementia. ‘Working with’ collaboratively not working to patients has been a fundamental change in attitude for organising services and research, and the fundamentals of co-production are intimately linked to citizenship and human rights. And we do need to ensure people get access to the right care at the right time. For example, there can be difficulty seeing your GP, or it is inadequately acknowledged that dementia care requires strategic consideration of palliative and end of life care providers, including hospices. It is noteworthy that, through working in partnership with their local community and care providers, hospices can ensure that the best of hospice care is extended to everyone affected by a diagnosis of dementia within their local community.
The NHS Five Year Forward View, the current strategic ‘masterplan’ of the NHS, emphasises integration, personalisation and empowerment:
“There is broad consensus on what the future needs to be. It is a future that empowers patients to take much more control over their own care and treatment. It is a future that dissolves the classic divide, set almost in stone since 1948, between family doctors and hospitals, between physical and mental health, between health and social care, between prevention and treatment.”
Chapter 1, Five Year Forward View, 2014 [https://www.england.nhs.uk/ourwork/futurenhs/nhs-five-year-forward-view-web-version/5yfv-ch1/]
Dementia has been the target of much stigma from society, and despite the rhetoric of ‘parity of esteem’, much more can be done to understand the physical and mental health needs of persons living with dementia. Recent initiatives such as ‘dementia friendly communities’ have identified that dementia is unlikely to be the only medical condition a person might live with long-term, and all that communities should be inclusive and accessible. Preventing certain people from being lonely and isolated has immeasurable social and well-being benefits for the individual. There are some amazing ‘dementia friendly’ initiatives – for example, a visit to the theatre can have a profound impact on people living with dementia and their families. It is crucial that all initiatives are culturally inclusive too, including raising awareness and promoting understanding of dementia within BME communities, which might mean physically visiting day centres, community groups and religious centres to talk about dementia and tackling the stigma that surrounds dementia.
Dementia is thought to be the most feared condition in adulthood, and this can affect diagnosis-seeking behaviours as well as the message that ‘nothing can be done’ after a diagnosis. A person never receives a diagnosis of dementia alone; so, understanding how the diagnosis impacts on that person and those closest to him or her is of fundamental importance. What happens after a diagnosis can be incredibly complex, and we need health and social care systems which are flexible, adaptable, and correctly resourced to cope. Interventions for living well, supporting well or caring well are not just medical, but can also be psychological (cognitive or behavioural) – and might prevent further decline. Professionals can unfortunately instil a feeling of helplessness in a person diagnosed with dementia, referred to within Kate Swaffer’s construct of ‘prescribed disengagement’™.
But an alternative view is possible.
Take for example Wendy Mitchell – living with dementia:
“However, I’m also hoping I can convey that, although we’ve been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we still have feelings. I’m hoping to show the reality of trying to cope on a day-to-day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. Living well with dementia is all about adapting. Adapting to new ways to enable us to live better for longer with dementia.”
(Wendy Mitchell’s blog – “Which me am I today?” https://whichmeamitoday.wordpress.com)
Dementia is a prevalent condition, but trends are complicated due to the effect of risk reduction work, the numbers of our ageing population and improved rates of diagnosis nationally. There are possibly about 900,000 people currently living in the UK with dementia. However, the nature of the condition means that managing it can pose unique and sometimes difficult issues, both in the community and in other care settings, and “dementia is everybody’s business” meaning that this is a widespread societal concern, not just the caring professions. With the right support and opportunities, people with dementia and carers can successfully communicate, engage, participate and continue to be part of relationships and communities, and this is no matter how advanced their dementia. Indeed, in the last few years there has been massive progress in communities becoming supportive to people with dementia and carers. It’s appropriate that this touches the co-design of national and local policy too.
This third book provides some of the ingredients to a recipe providing the change for people living with dementia and carers would be supported in a holistic, person-centred way. It is impossible to deliver person-centred care in an exceptional way, without staff feeling properly supported and empowered to fulfil their roles. The language we use is a critical aspect to this. Notwithstanding, there is a strong sense of interconnectedness in the ‘dementia’ sphere, and people in person-centred integrated care tend to be aligned to certain values of openness, trust, valuing difference, innovation and collaboration.
There have been enormous strides in how people living with dementia are supported, however there is always more to be done. Technology now embraces telehealth, telecare, mobile health, telemedicine, e-health, smart home technologies and Internet of Things, but is increasingly including informatics (including electronic health and care records), big data, artificial intelligence as well as health and care robotics. There’s no reason why dementia care and support in the future should be excluded from these technological developments, with the growing use of mobile devices, apps and social networks is becoming significant in enabling people to live more independent live. Together with care planning and continuity of care, the basic infrastructure of integrated care can be formed. The intelligent use of technology is transforming the way that people connect and services are delivered and gain resonance. Digital technology and social networks provide some of the most powerful tools available today for building a sense of connectedness among groups of people with similar interests and concerns.
Cost pressures are requiring providers to find new ways of developing a compassionate, capable and competent, yet affordable workforce. Furthermore, both specialist and generic services can struggle to cope with the increased demand upon services. We know there’s a ‘funding gap’ referred to the ‘Five Year Forward View’. But this should be the driver behind transformation plans. Many people involved in dementia care feel there’s also a ‘time gap’ – people with dementia need more of it and hospitals don’t seem to have any. The experience of someone with dementia is often affected by how well the discharge out of hospital goes. For example, a specialist occupational therapist to make sure we got the discharge process right for dementia patients and focussed on safe transfer of care from hospital into the community. Many would like to give a commitment to really making time for residents in its care homes and houses allows all to be treated as individuals, as this provides an environment where residents who are living with dementia can improve their quality of life.
The pressures on residential care are enormous. Some care homes face insolvency. Managing risk through correct governance is important on clinical, business and financial axes; by managing risk you can better prepare for, understand and minimise it in order to achieve care aspirations. To embrace person-centred care it is necessary to embrace an appropriate culture, and this might require strategic change management – it’s not simply a question about physical buildings, nor isolated ‘pledges’. Each person is an individual with individual needs and changes to the environment needs to nurture that person, and this includes the health and wellbeing of staff. The potential problem with framing promoting wellbeing as ‘activities’ is that the focus instead of being on the person becomes focused on the task. Promoting wellbeing might advance ‘life skills’ and improve mental condition, helping and inspiring participants to reminisce and rediscover aspects of their lives. Ideally then all ‘activities’ would be based on the interests, desires and wishes of our residents, and might include tai chi, massage, cream tea, arts, singing, flower arranging, or music. We know that communication is incredible important. Stories can strengthen emotional links between generations, and help to mitigate against negative effects of the combination of dementia, depression and loneliness in communities.
We live in exciting times.
2.00 Introduction Lisa Rodrigues CBE
2.10 Preventing excess disability through psychological approaches: a clinical psychologist’s view, Reinhard Guss
2.25 Co-production, human rights and citizenship, Alison Cameron
2.50 Technology and supporting well, Maneesh Juneja
3.10 Acute hospitals and caring well: a clinical nursing specialist’s view, Lucy Frost
3.30 Networking Break (with afternoon tea and biscuits)
3.50 Acute hospitals and caring well: a physician’s view, Avinash Sharma
4.10 Care homes and promoting wellbeing, Yvonne Manson and Joe Walker
4.30 Hospices and dying well, Sarah Russell and Marie Cooper
4.50 Living alone at home, Wendy Mitchell and Jo Moriarty
5.10 Open discussion
“How can we best address the needs of persons living with #dementia and those who care for them?”
Dr Shibley Rahman
London, 16 November 2016