In this blog for our #dementiaspotlight series, Carrie Jackson from the England Centre for Practice Development looks at innovations in supported care in the community, social living models, that might help people to live well with dementia.
#HelloMyNameIs Carrie Jackson and I am the Director of the England Centre for Practice Development, a unique national centre for applied health research, practice development and innovation focusing on the achievement of person centered safe and effective care across many contexts and countries.
This blog looks at the potential for integrated community social living models such as Guest Houses with Care, co-created with older people and people living with dementia (PLWD), their carers and families to be cascaded to the UK from the Netherlands and Belgium. It will outline a new 4 year European funded project to cascade excellence in dementia policy and practice to the UK and consider what this may mean for the way in which we configure our services and approach to the concept of living well at home in the future. The blog explores the question “How effective are models of housing and care used in countries other than the UK in supporting care in the community for PLWD and other long term conditions?”. This is increasingly important given the surge in younger onset dementia and our crisis in finding suitable funding models and appropriate services that will enable people to live independently for as long as possible at home.
Why is this so important to me?
I am a practice developer and researcher co-creating innovations in services with people and that drives me in my day job, but I am also carer for my mother who was diagnosed with mixed dementia in 2013, and for my brother who has recently been paralysed following a traumatic spinal cord injury. Through these life changing experiences as a carer and a nurse, I am committed to finding cutting edge practices that will support others and enhance our collective understanding of how to transform our existing services to meet the growing demand for future. I want to make sure we share best practices and learn from others about different social models of care at the heart of our communities that offer advice and support when we most need it (see https://carolynjacksonblog.wordpress.com/). Most importantly it is vital that we move away from the medicalisation of dementia and the stigma therein attached to it, evidenced through the use of labels used widely in the media to describe people as “sufferers” who are somehow “diseased” and a burden to society. Instead I believe we should focus on co-creating new community models of care and support that help to create:
- A place to live that is dementia friendly;
- A sense of worth and inclusion, in a community that understands;
- A caring and supportive environment, within which needs are recognised;
- A commitment to work together to meet people’s needs; and,
- A commitment to becoming a community that works together as an alliance to create resilience, rising to the challenge of dementia.
From a research perspective it is really important that future research continues to focus on early diagnosis and prevention across the lifespan whilst at the same time providing an economic and social impact evidence base for how integrated models of person centred care and support close to or in the home will break the medical deficit cycle. This will of course require fiscal investment and improved training and development of our existing and future workforces.
Why should we focus on this as a policy priority?
Dramatic global increases in future numbers of people with dementia have been predicted. Alzheimer’s disease International (ADI, 2013) suggests that the 36 million people with dementia in 2010, will double every 20 years to 66 million by 2030 and to 115 million by 2050. In the UK, by 2025 the number of PLWD is expected to rise to over 1 million. Alzheimer’s UK have estimated that the annual cost of dementia is £32, 2502 per person (Alzheimer’s Society 2013). However, there is a public misconception that dementia only affects the +65 age group. For example, Dementia UK (2014) suggests that there are 42,325 people in the UK who have been diagnosed with young onset dementia, suggesting that the 5% of the 850,000 people diagnosed currently might be closer to 6-9%. Once they are diagnosed, there are often fewer services designed to meet their needs and preferences. The proportion of a population who have a particular condition or characteristic. For example, the percentage of people in a city with a particular disease, or who smoke. rates for young onset dementia in black and minority ethnic (BAME) groups are higher than for the The group of people being studied. Populations may be defined by any characteristics e.g. where they live, age group, certain diseases. as a whole and BAME groups are less likely to receive a diagnosis or support. People with a learning disability are at greater A way of expressing the chance of an event taking place, expressed as the number of events divided by the total number of observations or people. It can be stated as ‘the chance of falling were one in four’ (1/4 = 25%). This measure is good no matter the incidence of events i.e. common or infrequent. of developing dementia at a younger age. Furthermore it is difficult to find Data is the information collected through research. enabling any kind of estimate of the numbers of LGBTQ people living with dementia, nor to come to any conclusions about whether or not individuals are being supported well and this represents a real gap in terms of intelligence and evidence.
What can we learn from social living models that might help us in the UK?
Recent strides to improve the quality of research, learning and practice development in the care home sector has been a focal point of Care England funded by the Department of Health. For example the Teaching Care Home Pilot and in Scotland the focus has been on creating person centered research based care homes.
However the CASCADE project is quite different – Community Areas of Sustainable Care And Dementia Excellence in Europe.
CASCADE is a novel social innovation cross border EU initiative between partners in the Netherlands, Belgium, France and England (2 Seas region) which aims to evaluate the Guest Houses with Care model in three case An investigation of a healthcare problem. There are different types of studies used to answer research questions, for example randomised controlled trials or observational studies. sites. There is widespread anecdotal evidence that these models are associated with a range of care Outcomes are measures of health (for example quality of life, pain, blood sugar levels) that can be used to assess the effectiveness and safety of a treatment or other intervention (for example a drug, surgery, or exercise). In research, the outcomes considered most important are ‘primary outcomes’ and those considered less important are ‘secondary outcomes’. that enable people to live well at or close to home but there is no published research evidence base to date.
Guesthouses with Care provide integrated community facilities for older people living with dementia combining assisted living, short stay, longer stay and rehabilitation with dementia care facilities that offer group living with on site carer support. The uniqueness of the models are that they have fluid structures for integration of care that follow the client’s condition instead of the client following the medical structures of local health and care providers. Health and care professionals are co-located to provide GP, pharmacy, allied health support, nursing and medical support, alongside shops, local transport, church and other services. Local schools and nurseries are integrated and central to the community promoting intergenerational living. They operate with flat organisational structures and small teams that facilitate collaborative and creative solutions to address local health issues for the The group of people being studied. Populations may be defined by any characteristics e.g. where they live, age group, certain diseases. they serve.
CASCADE aims to develop and test a financially sustainable model for provision of care for people living with dementia that decreases demand on hospital beds, increases the number of trained staff and carers and provides greater wellbeing for service users, staff and the wider community. In the UK, the CASCADE project will work in partnership with East Kent University Hospitals NHS Foundation Trust and Medway Community Healthcare to provide funds for existing housing stock owned by the NHS to be updated and converted to provide ‘state of the art’ short-term respite and longer-term care facilities, which are fully integrated into their local communities in Dover and Medway towns. Both communities have a high degree of social deprivation and unemployment and the vision will be to provide opportunity for the community to come together to provide employment and volunteering, working with schools and colleges to promote intergenerational support for the communities to live well with dementia and other long term conditions.
These new centres in the region will also contain sophisticated e-learning and online consultation facilities linking them to expertise across Europe and provide cross-border interprofessional centres of excellence for dementia care in the future. These, together with a new integrated care model developed in the Netherlands may be transferable to other settings once necessary adaptations are made. Once refined, it is intended that the model will be freely available to all who wish to use it subsequently, including commercial and not for profit organisations wishing to offer new, community-focused and economically sustainable models of service provision.
What can we learn from the Netherlands?
I have just come back from my first visit to care facilities in the Netherlands where, the ZorgSaaam facility at the heart of Terneuzen is one of our case An investigation of a healthcare problem. There are different types of studies used to answer research questions, for example randomised controlled trials or observational studies. sites over the next four years. With a mandatory insurance backed health care system in the Netherlands, the focus on rehabilitation and personal health and independence is at the heart of access to Something done with the aim of improving health or relieving suffering. For example, medicines, surgery, psychological and physical therapies, diet and exercise changes. across primary, secondary and tertiary sectors. You cannot for example seek surgical A treatment, procedure or programme of health care that has the potential to change the course of events of a healthcare condition. Examples include a drug, surgery, exercise or counselling. for a knee replacement if you have not demonstrated that you have exhausted primary care Something done with the aim of improving health or relieving suffering. For example, medicines, surgery, psychological and physical therapies, diet and exercise changes. options of physiotherapy, exercise, diet and lifestyle interventions driven by the patient.
Here a whole community of services (village) sits at the heart of the town with elderly care GP specialists running a 24 hour service embedded within the village, alongside the pharmacy, co-located services (speech and language therapy, physiotherapy, occupational therapy, rehabilitation, counselling and psychotherapy), chapel, care advisory services, hairdressers, shops, restaurants, nurseries and schools). A rehabilitation gym provides support to both in and outpatients with independent and assisted living facilities (for PLWD), short stay, physical rehab and long stay services.
The focus on rehabilitation means that all care is directed to enabling people to get home to independence as soon as possible and opportunities for young and older people to network on a daily basis through the nursery and school is an important part of healthy ageing and developing awareness of how to offer mutual support networks.
The local STIMUL facility provides students with an opportunity to work with simulation through care ethics labs to literally “put nurses to bed” to learn about the experience of giving and receiving care. STIMUL was a partner in another 2 Seas Dignity in Care project involving partners in the UK. This model of learning has had a dramatic impact on student learners, mentors and professional practitioners and managers who have also experienced being a recipient of care as part of the scheme. Learning wards provide opportunity for student interns to mentor each other across the lifespan of their training with qualified staff acting as professional coaches and students in charge of making care decisions based around the needs of their patients. Academic lecturers visit once a week and provide a programme of practice focused learning driven entirely by the needs of the students not the other way around.
Personally for me, besides the wonderful potential for innovation in the UK, there is also the prospect of transforming our own workforce development and professional training programmes in the UK. We will certainly need to radically transform the way in which we facilitate the development of undergraduate health professional trainees and apprentices in the coming years ahead. Our traditional hospital based models of “teaching” will not create the clinical systems leaders of the future who are capable of innovating new services based at the heart of communities. To do this you have to be IN the community WITH people and possess the skills to facilitate collaboration, inclusion and participation to have a meaningful dialogue with people at what matters most to them.
At this juncture, as we start this four year project, we are asking the key question “How effective are different models of housing with care (integrated/separated/specialist/ dedicated/hybrid) for supporting people living with dementia on quality of life/outcomes/costs of people with dementia and their carers? How do these compare to residential care?”
Join in the conversation on Twitter with @CochraneUK #dementiaspotlight or leave a comment on the blog.
References may be found here.
Carolyn Jackson has nothing to disclose.