CAROLINE BARTLE says dementia care training should enable people to provide care that is progressive and not just about maintenance.
There are over 43,000 people with dementia in New Zealand, and this number is growing. The Dementia Economic Impact Report carried out in 2008 estimated that the economic cost of this was about $712 million per year. This, the largest economic impact study of its kind, informed the development of the dementia strategy – a definitive strategy identifying dementia as a major health priority. The Minister of Health, Hon Tony Ryall, describes the situation as the ‘tsunami of dementia’ and calls for an urgent and strategic response to this national crisis.
Within the dementia strategy, there is a clear focus in developing services in a way that will minimise the economic impact of dementia. For example, it aims to invest research into identifying sustainable community care options and develop best practice in dementia care. However, the two are interdependent. In order to achieve a sustainable community care option, the focus has to be on ways to embrace best practice. This will enable people who have dementia to reach their optimum level of functioning through the application of new skills according to best practice.
How is this to be achieved?
Should we, as professionals, be thinking in a very different way about dementia? Is it time to start thinking practically about what can be done to sustain abilities, enhance well-being, and improve longevity in people with dementia?
We have come a long way since Tom Kitwood introduced concepts of person-centred care. However, many organisations still struggle to define this in a way that can be clearly explained and replicated. As a concept, it is all-encompassing, as it incorporates a wide range of ideologies, adding to its complexity. Developing this into a sense of something meaningful continues to be a challenge for many service providers, as it is more than systems and techniques and has a value base that provides the context for therapeutic relationships.
The VIPS model, as established by Dawn Brooker, provides a useful framework for understanding person-centred care in practice: Values, Individuality, Perspective, and Social Environment. This model highlights the importance of understanding perspectives of the person with dementia, having a real understanding of how changes in memory impact on orientation, self-image, and self-identity. All these factors play a part in the way the individual interacts with the social environment, as understanding the nature of self is central to wellbeing.
The VIPS model also highlights the role of the social environment in the wellbeing of a person with dementia. These perspectives are the foundations of psychosocial interventions that are gaining ground in the area of dementia care, and now sit firmly alongside medical interventions as valid techniques. Taken together, this is known as a bio-psychosocial framework.
The reality for many service providers is that they struggle to make room for this type of intervention in their day-to-day routines. For many, it is easy to dismiss these interventions, considering such activities as requiring a high level of skills, perhaps leading them to consider such activities as being more the domain of the psychologist or occupational therapist.
In progressive organisations, diversional therapists and activities organisers are tasked with meeting the social needs of an individual in a focused way. In these organisations, they acknowledge that the role of providing dedicated individuals to deliver activities is, in part, a psychosocial intervention.
Is this enough?
Shouldn’t all caregivers be actively practising this, embedding such activities in their daily tasks? Arguments about an inability to practise in this way as a result of time and resources are not always credible. There is a convincing argument about the quality of the intervention being more paramount than the amount of time available to meet social needs. It’s about doing what is possible within the context of a limited health and social care budget. The challenge is finding ways of embedding these practices into the role of the front line staff. This is where a real impact is seen, as consistency is an essential requirement to aid the challenges faced by memory impairment. Inconsistent, ad hoc approaches are unlikely to have a measurable impact.
Dementia Care Mapping, which originated from the University of Bradford, is able to identify the impact of positive interventions on the individual. This observational tool is a powerful agent for change and has been developed to observe the impact of the social environment on a person with dementia. These observations can identify the amount of time spent on meaningful activities engaging a person with dementia. Often, the observation indicates that a minimal amount of time is spent meeting important psychological and social needs. The United Kingdom’s Home from Home report, carried out by the Alzheimer’s Society, identified that as little as ten minutes per day were spent in meaningful interaction, over and above basic care tasks.
Over the last few years, there has been an explosion in the range of psychosocial interventions, such as music therapy, art therapy, dance therapy, life story work, and reminiscence. Alongside these, there has been a growing body of evidence for the role of rehabilitative approaches to dementia care, particularly as these appear to sit comfortably with political agendas in reducing the economic impact of dementia. There has been much written about how psychological states impact on brain pathology. When individuals are provided with a positive psychosocial environment, ‘rementia’ can take place, increasing wellbeing and skills. The brain has the ability to adapt, which is sometimes called brain ‘plasticity’. A lot of exciting research continues in this area. We know that in healthy brains, neural pathways can change following a trauma – for example, when a person is unable to recall a painful experience, particular pathways are bypassed.
Whilst we are a long way from identifying the precise relationship between psychology and pathology, we are beginning to understand the consequences of poor care on physical wellbeing – more specifically, on cognition. For example, the symptom of being ‘withdrawn’ is more likely to be a consequence of poor care than organic changes in the brain. Poor practice can then lead to a reduction in abilities and an increase in the need for care, thereby escalating the economic burden.
There are three main types of cognitive-focused approaches, as developed by Linda Clare: cognitive stimulation, cognitive training, and cognitive rehabilitation. Cognitive stimulation includes techniques such as reality orientation. Reality orientation has its supporters and critics, and as with any technique, none have a global application. Careful assessment needs to identify what is appropriate for that person, particularly with the complex and fluctuating nature of dementia. Cognitive stimulation is often delivered in an ad hoc way, which works well with the fluid nature of a residential or home support service.
Cognitive training differs in that it is described as involving a standardised approach, focusing on one aspect of cognitive functioning. Many products are available on the market to support this kind of ‘brain training’. However, in the context of supporting a person with dementia, this approach lacks the ‘person-centred’ context, which limits its application.
Cognitive rehabilitation has a much wider application, as it is planned and goal-oriented, specific to the individual. It utilises different strategies to support memory. The goals are identified by the person with dementia, alongside their carers. There is a great deal of self-determination and meeting of psychological needs in the development and delivery of this type of intervention. Yet this approach is not widely adopted. Instead, care plans focus on deficits or needs rather than strengths and abilities, failing to identify how to make the most of the remaining skills and abilities. A significant shift in thinking needs to take place before a real impact can be made.
It might take a revolution in dementia care to get people thinking differently, as radical shifts need to be made. Services have to define themselves as therapeutic, progressive, and goal-oriented. Much can be done within the home care sector to reduce admission to residential care. This needs to be done alongside the appropriate application of medical interventions, relevant multi-disciplinary support, and the effective and ethical use of assistive technologies. Targeted intervention is possible at every stage, although it will differ according to need. For example, cognitive rehabilitation will be targeted at the earlier stages, psychosocial interventions in the middle stages, and a more sensory approach at the later stages.
Looking to the future
We can start with high-impact training, which is delivered through a range of techniques: classroom-based, mentoring, and guided reflection. We can appeal to the interpersonal nature of the caregiver, by truly connecting with them through humanistic-type training methods. Changing attitudes starts by understanding the experience of dementia, through guided techniques, to develop empathy. It is also about empowering caregivers in understanding their power of change within the context of the social model of care.
Developing empathy is a practised skill, which can be achieved in many different ways. Tom Kitwood’s dementia equation suggests that we need to think about the experience of dementia on several domains: the neurological impairment, the physical health, the biography, and the social environment. Taking a broad holistic perspective is how we make real changes. Caregivers need to be given the skills to communicate with people with dementia and strong leadership is required to sustain and build upon changes initiated from training.
Caroline Bartle is most well known in the UK for her contribution to the ‘knowledge sets’ and her developing work in the new QCF Dementia Qualifications. Since arriving in New Zealand, Bartle has partnered with Leigh Kelly of Clinical Update Training in a quest to empower people to consider dementia care as ‘therapeutic care’, which is progressive rather than just about maintenance. Bartle has also established a dementia training and consultancy organisation, 3spirit.