On 21 June 2019 the House of Commons Library published a briefing paper entitled Dementia: Policy, services and statistics, which reviews the policies, services and statistical evidence pertinent to people living with dementia in England (Powell and Baker, 2019).
This parliamentary briefing gives details of several campaigns and policies on dementia care in the UK, one of which is the campaign led by the Alzheimer's Society entitled ‘Fix Dementia Care’. This campaign calls for the state to play a larger role in underwriting the costs of dementia care. Over the past two decades, the average cost of a nursing home place for someone living with dementia has almost doubled and is now nearing £1000 a week, with typical costs amounting to, on average, £100 000 over the course of the illness (Alzheimer's Society, 2019).
Background
The House of Commons briefing paper reviews a range of English policies aimed at improving dementia diagnosis, care, support and research. There are an estimated 850 000 people living with dementia in the UK and it is predicted that this number will double by 2040. In recognition of the scale of the problem, the Government has set itself an objective to become a world leader in tackling the management of dementia and has given a commitment to improve diagnosis, care and support, and research (Powell and Baker, 2019).
Former prime minister David Cameron launched the Prime Minister's Challenge on Dementia 2020 in 2015 in which he committed his government to putting in place a raft of processes to address some of the complexities of dementia care in England by 2020 (Cabinet Office et al, 2015).
One of the key objectives was to ensure that all NHS staff receive training in dementia care appropriate to their role. In February 2019, the Government published an update, which showed that more than one million NHS staff had attended dementia awareness training sessions (Department of Health and Social Care (DHSC), 2019).
Similarly Making a Difference in Dementia: Nursing vision and strategy, published in March 2013, and since updated (Department of Health, 2016) articulated a vision of how nurses could maximise their unique contribution to the delivery of high-quality, compassionate care and support for people with dementia and their carers/families. This strategy aimed to ensure that all registered nurses were able to deliver safe, high-quality, compassionate care within all care settings, including a person's own home.
What are the features of dementia?
Dementia primarily affects people over the age of 65, with 1 in 14 people in this age group developing dementia. The likelihood of developing dementia increases significantly with age and this explains the paradox of people living longer, but with an associated increased risk of developing dementia (Powell and Baker, 2019).
There are around 540 000 carers of people with dementia in England. It is estimated that one in three people will care for a person with dementia in their lifetime, causing significant personal, social and financial pressures. The House of Commons briefing paper suggests that the cost of dementia care for the UK's economy amounts to £23 billion each year and is expected to rise (Powell and Baker, 2019).
There is a growing body of empirical evidence that underpins claims that it is possible for an individual to reduce their risk of developing dementia by not smoking, reducing their alcohol intake, lowering blood pressure, increasing physical activity and avoiding type 2 diabetes by weight reduction (Powell and Baker, 2019). Poor lifestyle choices can increase the risk of developing dementia and Barnett et al (2013) argued that the protective effects of healthy lifestyles will also mitigate the effects of dementia.
Dementia UK has defined dementia as an umbrella term for a range of long-term, progressive neurological conditions that are linked to a decline in brain functioning, and lead to memory loss, reduced thinking speed, mood changes, reduced motor coordination and problems in carrying out activities of daily living. There are many variants of dementia—the most common being Alzheimer's disease and vascular dementia (Dementia UK, 2019a).
Dementia UK funds Admiral Nurses, specialist dementia nurses who can give expert practical, clinical and emotional support to families living with dementia. These nurses also work collaboratively with other dementia care providers and care staff and share their own skill set and competencies. This collaborative working helps frontline nurses to become more effective in the management of people in their care who are living with dementia (Dementia UK, 2019b).
Dementia-friendly hospitals
In October 2012, the National Dementia Action Alliance (NDAA) launched the ‘Right Care’ initiative, which was designed to develop dementia-friendly hospitals. The alliance contacted all acute trusts in England to urge them to make a public commitment to become a dementia-friendly hospital and work in partnership with the NDAA to achieve this. As part of this initiative, the alliance launched its Dementia-Friendly Hospital Charter in 2015 (now updated). The charter's pledges include giving those patients living with dementia the right to be recognised as an individual, to make choices about their lives, and to receive evidence-based, appropriate compassionate and properly funded care and treatment from trained people who understand the parameters of the disease (NDAA, 2018).
The House of Commons briefing paper reiterates Cameron's call for all NHS staff to have training on dementia appropriate to their role (Powell and Baker, 2019).
The nurse's role
A large part of dementia training is learning how to create a suitable environment for patients living with dementia. One of the key principles is in ensuring that the care environment is configured in such a way as to enable these patients to navigate the environment easily and safely. One way is to limit or minimise any patient moves within the hospital and to use signage and provide orientation cues that support navigation and help with decision-making throughout the whole hospital.
In recognising that patients with dementia may find it difficult to identify their own bed within a bay, one ward manager of a medical unit at a hospital in Brighton launched a coloured blanket scheme to help such patients find their way back to their beds more easily—and this has also significantly reduced the incidence of falls (Booker-Lee, 2018).
Many clinical areas caring for patients living with dementia have now adopted the ‘Butterfly Scheme’, which was developed by a carer who experienced a number of negative aspects of care when her mother, who suffered from dementia, was admitted to hospital for a planned procedure, which required a short stay (Williams, 2011). The short stay turned into a much longer admission because the policies and procedures used within the hospital for the care of such patients were inadequate to meet her mother's needs. Subsequently the Butterfly Scheme was launched and is now embedded within many hospitals. A butterfly symbol alerts all staff that:
Senior nurses within the medical directorate at Walsall Manor Hospital have introduced a new project to help build better communication with dementia patients. ‘What matters to me’ boards above the patient bed space give patients the opportunity to communicate their specific personal interests to the staff caring for them. By using the boards, patients and carers can let staff know their favourite type of meal, the way in which they prefer to take their medication, their previous occupation, preferred type of music or the people who are most important to them. These boards have been shown to enhance communication between patients and the people who care for them (Archer, 2019).
At Salisbury NHS Trust and at Barking, Havering and Redbridge University Hospitals, nurses use the concept of the tea party to complement the clinical care dementia patients receive. They use vintage china crockery to recreate experiences from a former era, and tea and cakes are served, sometimes accompanied by music (Seymour, 2017; Still, 2019).
Perhaps one of the most innovative aspects of dementia care that has been introduced by many nurses working in the field is that of reminiscence therapy. Reminiscence therapy is used to help patients with dementia relate to their past lives, to put their lives in perspective, and to uncover lost and important memories about friends and loved ones. Such memories can be evoked through the use of the five senses to help the person living with dementia remember events, people and places from their past lives. In a systematic review of research into the use of reminiscence therapy Park et al (2013) showed that it can reduce depression and mitigate against the use of potentially harmful antipsychotic medication. Similarly, a randomised controlled trial found that regular reminiscence therapy should be considered for inclusion in routine care for the improvement of cognitive functions, depressive symptoms, and quality of life in elderly people living with dementia (Lök et al, 2013). Reminiscence software can help people living with dementia to remember their earlier lives (Bawden, 2016).
The House of Commons briefing paper summarises all aspects of care and polices related to dementia and is a recommended read for all who work in this field.