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Much unites us than divides us on integrated care in dementia

One of the many advantages of not being invited to conferences or not having to apply for any funding or grants is that I am able to think about how policy actually gains meaning (or not) for people on the ground. I am not interested in the marketing of ‘patient opinion’, or the goldfishonomics of telling platitudes to power. The fact is that the NHS and social care pressure points do exist; some ‘leaders’ are milking the system for their own careers and effectively fiddling while Rome burns.

For months, I’ve been writing (completely unpaid, of course) a new book to be published by Jessica Kingsley Publishers on 20 January 2017. The book ‘Enhancing health and wellbeing in dementia: a person-centred care approach” does exactly what it says on the tin, and maintains that promoting health and wellbeing should be no.1 irrespective of setting, such as care home, hospice, hospital or at home.

This week, Health Education England published a very important document. The Dementia Generic Service Interventions Competency Framework is intended to support the development of a competent and confident workforce across the West Midlands Region, all disciplines and sectors, in order to provide an effective, quality service to meet the needs of the people with living with dementia, carers and families, in all settings, including those providing acute care or in the community.

It is divided into nine sections/pathway points which include statements of activities, skills and knowledge required to work effectively at each pathway point with the focal point of the framework is the individual. These are described in relation to my work below.

West Midlands Dementia Competency Framework - Sept 2016 FINAL-5

This framework was commissioned and funded by Health Education England – West Midlands as part of a dementia innovation programme hosted by North Staffordshire Combined Healthcare NHS Trust. It was developed in collaboration with Skills for Health, steered by a multi-disciplinary group of professionals from medicine, nursing, dental, education and academia backgrounds working in primary, acute and mental health settings. The group also engaged with colleagues from social care and 3rd sector organisations and most importantly people living with dementia and carers of people living with dementia. Key contributors included Dr Karim Saad (@KarimS3D) – Project team 1 chair, The people living with dementia and carers who have provided expert reference, advice and guidance, and Chris Malvern (@NHSCMalvern) – MHI LETC Workforce Development Specialist.

With increasing opportunities for risk reduction, tackling stigma and discrimination, defining and setting standards of post-diagnostic support, and developing a sustainable approach to dementia inclusive communities, this means that care providers must now expand the skills of their workforce, ensuring that those living with dementia can benefit from a fit for purpose, integrated, evidence-based dynamic dementia pathway. This is of course much easier said than done, and one of the most frustrating things for me has been that – for years – people have said repeatedly that ‘people are lost in the system’, with a massive reluctance to put down the essentials of the ‘care pathway’. There are of course good reasons not to set in stone signposting to services which no longer exist due to swingeing cuts, but it would be helpful for many people with dementia and their closest to have an idea of what to expect.

In 2008, people with dementia in the West Midlands together with their carers and a multidisciplinary group of clinicians recognised that, despite the worrying demographics of dementia in this region and the projected dwindling numbers of carers, there were no overarching, proactive dementia services. Their vision was to develop a West Midlands Integrated Dementia Pathway to enable anyone with a suspected or confirmed diagnosis of dementia to access an integrated, seamless, proactive and high quality locality based service that encompasses all the expertise to meet the needs of the people with dementia and those of their carers. Likewise, earlier this year I wished to write an inclusive book, educating commissioners as well as helping current practitioners and professionals, but which could be read by friends and families of people living with a dementia diagnosis.

I in the end settled on some specific strands

Multimorbidity

Dementia rarely travels alone.

Interoperability

At its most primitive level, this means data can be free flowing between different parts of the system, such as care home, health and social care.

Rights

Rights give you permission to do something or not to have do something. Whether or not you wish to spend time, effort and money discussing whether international instruments put people with dementia within the disability sphere, the vast majority of people with dementia and carers want to know what rights exist which are meaningful to them in their locality – and how to access them and use them.

Health

Irrespective of care setting, a person with dementia always fundamentally has a right to health. This can be enabled or compromised by healthcare systems. Wherever you are, and this includes care homes, there has been acknowledgement of the need to  promote physical health to maintain mobility and independence, and to do this in a way which maximises someone’s dignity and continuity of care (such as through ‘life story’).

Enablement

Like reasonable adjustments for physical disability, enablement conveys the notion that there are ways to help people with dementia with particular difficulties (say in memory) with help to improve quality of life, health and independence. But it is so much more than what happens in the health and social care sectors (important though that is) – appropriate housing can support a safe environment and using assistive technology can help support choices. It’s important that people are actively involved in care pathway options, where necessary, for example moving to a supported housing situation while able to establish new routines, or a move to residential care if deemed desirable. But there are wider issues indeed, for example the importance of enabling individuals to remain in employment, and the importance of employer support to enable people to remain in employment.

Complexity

Dementia is not simple at all. Catering for any needs of persons with dementia and their nearest needs acknowledgement of the complexity of the relationships between different people and organisations, and needs a system which can make sense out of what appears as chaos at first sight. It’s therefore all the more important to  provide specialist supervision and consultation to individuals and teams on how best to support and manage someone with complex health needs, and to provide dementia specific guidance and consultation to individuals and teams where people need complex and non-routine care for physical health.

Care planning

As such, any journey you make requires you to go from A to B, but planning the journey not only involves some idea of where you might be going but also requires you know what you’ll need to travel successfully. interpret and use information from assessments to develop a meaningful care plan. I hope my book will encourage people to see a benefit of carrying out integrated care planning. There’s been over years, with varying degrees of success, a turn around from people being passive recipients of services to people who are actively and organically breathing life into services so that they stay relevant. Care planning is all about creating and managing relationships with other services, individuals and families, and there are clear advantages to forward planning to avoid crisis, e.g. accommodation and health needs. The person-centred integrated care plan to incorporate wellbeing for the carer and family is a therefore a very significant development.

Independence and interdependence

The ideal would be that the person who “takes control” is the person with dementia himself or herself, but suitable tools are needed for this, such as bespoke genomics information, information about care and services, budgets, etc. But the paradox is that it is not possible to do things alone – because of the complexity of the system the principal actors are involved in a system as a whole and are highly dependent on each other. Take for example the promotion of physical and mental health for people with dementia in a care home – ideally a multidisciplinary team might be involved, for example occupational therapist, social worker, falls prevention service, or geriatrician, but we all know sadly the realities of service provision at present. Post-diagnostic support in this prism is therefore an active process, and individuals might be encouraged, for example,  to inform pharmacist, dentist, podiatrist etc. of a timely diagnosis of dementia.

Promotion of wellbeing

Dementia awareness has helped enormously in raising in terms of knowledge skills attitudes for all those working in health and care. The Care Act (s.1(1)) imposes a statutory duty to ‘promote wellbeing’, and a problem with the word ‘activity’ as applied to care homes is that it puts the focus on the task not the person – promoting wellbeing though is a pervasive aspiration that lives across different care settings, and which could be made available across all care settings through social prescribing.

Person-centred approaches

Concentrating on a person does not mean, of course, to the deteriment of not concentrating on friends, family or other important relationships. It’s important now for us to develop services that provide person-centred care, but pivotal to this is workforce planning, right skills, values based recruitment, fostering values based cultures, bringing activities to people.

Some key points from the generic competences framework relevant to my thesis are provided below.

circles

Access to safe, coordinated care

  • the need to ensure that the health and wellbeing needs of the person with dementia are being taken care of during the discharge and transition process
  • awareness of the common causes of dementia, dementia, and that dementia may be expressed in different ways, for example fear of new people or situations
  • provide specialist supervision and consultation to individuals and teams on how best to support and manage someone with complex needs
  • provide specialist consultation to ensure that the maximum effectiveness of the multi-disciplinary team
  • identify when crisis/emergency planning should take place, ensuring people are prepared in advance, before any crisis occurs

Timely accurate diagnosis and treatment planning

  • the importance of a full medical history, laboratory tests, imaging, physical examination, characteristic changes in cognition function and behavior, in diagnosing dementia.
  • provide specialist supervision and consultation on how to identify hard to recognize or rare manifestations of dementia
    assess complex presentations of behaviour and plan a multifactorial response
  • plan treatment for palliative care/ advance care planning with individual concerned and multidisciplinary team
  •  take into account longer term housing options to reduce transitions, including assistive

Enabling Wellbeing, Care, Choices and Preferences

  • the benefits of a healthy diet/ exercise, dancing, theatre, shopping, other hobbies and interests
  • how environmental improvements to services enhance access and delivery of services e.g. pictorial signage, quiet waiting room
    documents that record personal information about and history of a person e.g. All About Me

Therapeutic care

  • how to make people feel safe and secure in an environment
  •  the importance and significance of essential care to maintain fluid intake and nutrition to avoid harm e.g. falls, infections, continence management and skin care to avoid tissue damage
  • the importance and significance of exercise to sustain fitness, balance and mobility
  • assess specific healthcare risk of people with dementia including sensory needs
  • provide specialist advice and consultation to those providing and managing a person with dementia’s end of life care pathway
  • the benefits of cognitive stimulation and meaningful activity
     the range of meaningful and purposeful activities available to meet the spectrum and level of need, memory games and group activities, reminiscence on IPods/MP3 players, magic touch screen, IPad/tablets, painting, string, texture, music, dementia cafes, peer facilitators/leaders
  • the value of peer support e.g. dementia cafe
  • carry out a poly-pharmacy assessment, identifying physical health care issues, e.g. dental problems as a result of some medications
  •  medications optimisation, arrange/carry out regular medication reviews and interaction, this may involve pharmacists, GPs, registrars, nurse matrons, continence teams, advocacy service, district nurses, other prescribers
  •  review previous medication when prescribing new medications

Person-centred Care

  • sexuality, sexual behaviours, loss of inhibitions and sexual health
     where support groups are and how to signpost to these
  • the contribution that can be made by spiritual care/religious and cultural organisations
  • develop organizational policy to enable timley and ease of access to person centered activity and personal budget
  • advise organisation on their strategy for assistive technology
  •  identify areas for future development
  •  contribute to new and innovate technology
  •  plan implementations and strategies
  •  design and deliver user experience evaluations

Family/Carer needs

  • encourage and support the carer in their caring role, including planning respite care
  • give information and education to family and carers about assistive technology
  • how carers passport and mechanisms such as open visiting, involvement pre -operation, assistance with parking, reduce cost of meals can support carers
  • how befriending and neighbourhood schemes help to support carers
  • the importance of enabling carers to remain in employment
    the importance of employer support to enable carers to remain in employment
  • support families, carers and the person with dementia with managing loss and grief.
  • support families using a range of initiatives: dementia surgeries, nurse specialist, Admiral nurses, help lines, crisis management and on line forum

Accommodation and Welfare Support

  • the importance of good, safe, warm accommodation on an individual’s health and wellbeing
  • the importance of sufficient income to meet personal needs and the impact on an individual’s health and wellbeing

Innovation and Improvement

  • utilise research findings to inform practice/share good practice
  • enhancing the knowledge skills and attitudes for key staff (experts) working with people living with dementia designed to support them to play leadership roles

Monitoring and Measurement

  • how to approach and communicate with a person with dementia in order to undertake physical health observations
  • promote lifestyle and behavioural changes that will improve wellbeing
  • knowledge and understanding of dementia care mapping observations, and other tools designed to assess and/or monitor care
  • how and why a positive risk assessment for people at risk of hospital admission should take place
  •  how to minimise risk and take a least restrictive approach

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  • Sue Newsome

    If only ! This is the ideal that would have made my Dad’last year of life so much less chaotic. Dad had 12 admissions in 15 months, his last was for aspiration pneumonia and he subsequently sadly died. Continued battling with ‘systems red tape and policies’ took time and emotional resilience away from supporting my Dad. Lack of resources and overworked staff meant Dad didn’t always get the care he needed. The fact that I had worked as an RMN for 15 years was for some staff I think the reason to label me as interfering whilst others valued my knowledge of my dad and professional knowledge. I wanted what was best for my Dad and knew what care he should have been receiving, my knowledge was seen as a threat, and a minority of staff were defensive and abrupt. When I eventually managed to speak to a Unit Manager on a Specialist unit for people with Dementia and Delerium I was afforded no respect and openly demeaned in front of a PALS officer. I had approached him as I was concerned about the lack of staff and one member of staff’s conduct. I was clear that most of the staff had supported Dad with dignity and respect. I was told in the meeting that he had avoided seeing me for a while as he didn’t think that what I wanted to discuss was important enough for him to deal with! I was told my reactions were disproportionate ! I was told that I took up too much staff time and that if they plotted a graph on which relatives took up most time. I would come out the highest ! I saw Staff probably 4 times in 6 months to properly sit down and discuss Dad’s care. When I visited I went out with Dad and carried ou all my Dad’s personal care ( which was my choice to maintain some of Dad’s dignity) I saw this as my role but it also freed up staff and some of them were extremely appreciative. This is only one incident out of a year. Some professionals have gone out of their way to afford Dad and I care and dignity and support us, these people I will never forget, others have forgotten their basics. This happened over the last year, we are still not getting it right. For Dad his trauma of wading through the chaos Dementia and Delerium reaked on his life has ended. I hope I have the strength to make a difference for others in a system that sadly let Dad and I down in some areas of Emergency,Primary, Secondary and Social Care. Lack of Resources and Specialist training need to be addressed, but empathy, understanding and maintaining dignity are skills Health and Social care staff should not have to be taught.

    • wellbeingdem

      Excellent comment – many thanks best wishes shibley