Dementia care – a positive future

Citation

Milne, A. and Hibberd, P. (2011), "Dementia care – a positive future", Quality in Ageing and Older Adults, Vol. 12 No. 2. https://doi.org/10.1108/qaoa.2011.55912baa.002

Dementia care – a positive future

Article Type: Guest editorial From: Quality in Ageing and Older Adults, Volume 12, Issue 2

The papers in this Special Issue are drawn from a two day conference entitled Dementia Care: A Positive Future. The conference, held in May 2010, was organised by the Dementia Services Development Centre South East, which represents a unique partnership between Canterbury Christchurch University, Dementia UK and the Avante Partnership. All three organisations have a core commitment to developing, supporting and/or delivering high-quality dementia care and all emphasise the importance of a positive and enabling “culture of care” in enhancing the quality of life of people with dementia.

The conference attracted over 200 delegates. Although the majority were from the SE region, there were also delegates from other parts of the UK and Europe. They were a mixture of professionals, family carers, support staff, academics and agencies that have links with or provide support to, people with dementia and their carers. The conference was made up of a rich mixture of papers and workshops offering a variety of foci. Whilst we do not have room for all these in a single issue – there were a total of 17 different sessions in total – the papers we do have offer a strong flavour of the tone and content of the event and articulate well the dimensions of positive care for people with dementia and their carers.

The special issue opens with a paper from Barbara Pointon reflecting on the caring journey she took supporting her husband Malcolm. Barbara is a well-known figure in the dementia field and her paper makes a particular plea for care to be developed and designed with the relationship between the person with dementia and their carer in mind. Care that is provided blind to the needs, wishes and rhythm of the caring dyad is, by definition, going to be unhelpful or worse. The lack of coordination of services and professionals is a second theme and one that resonates with many of the contributions of carers during the conference. The ongoing divide between health and social services is a particular bugbear. The value of having a single professional holding the whole “care package” together would have been so valuable to Barbara who struggled to keep abreast of the range and number of agencies and individuals who visited daily. She emphasises the absolutely central importance of empathy in staff and the need to develop relationships with the person with dementia and their carer. Without this, she argues, good care is nigh impossible. Her emphasis on Malcolm retaining his “essence” right to the end of his life is also a very important point and one that counters the widely held assumption that people with advanced dementia are simply bodily shells and not actual people.

Alisoun Milne’s paper reviews research evidence about what we know about the experiences of people who live with dementia in care home. There is a growing interest in capturing the lived experience of people with moderate to advanced dementia and at the same time, explore what life is like through the eyes of care home residents. Although we know something about care home life drawing on objective measures of quality of life, interviews, focus groups and questionnaires, the most insightful and detailed contributions have been made by observational approaches, notably dementia care mapping (DCM). DCM represented the first serious attempt to take the perspective of the resident with dementia and helped us to appreciate the importance of positive communication in promoting residents’ well being. That DCM is both an evaluative instrument and a vehicle for practice development places it in a unique position in terms of assessing quality of life amongst residents, including those with high levels of dependency. More recent attempts to evaluate the lived experiences of care home residents have added further to our understanding of care home life. This small but growing body of research suggests that narrative, life history and their expression through story telling are crucial in the preservation of self and identity amongst residents with dementia. Care home staff can promote a person’s sense of self by drawing on biographical material to bolster identity. Further, it appears important to acknowledge the losses many residents experience, especially those relating to dementia and recognise the lack of control and limited self-determination that tends to be associated with “being in a home”. According priority to the development of positive therapeutic relationships between staff and residents is pivotal to the delivery of genuinely person-centred care.

Jonathan Webster reviews the potential to develop person-centred care for people with dementia in acute hospital settings and the value of doing so. He acknowledges that acute hospital wards are complex places but challenges the assumption that person-centred assessment and care cannot be delivered in this environment. Drawing on case examples he argues that not only does it have the capacity to enhance quality of treatment for people with dementia and improve outcomes, but also save time and contribute to higher levels of job satisfaction. Patients who are understood and responded to tend to display lower levels of challenging behaviour, are calmer, more receptive to accepting treatment and have higher levels of well being. Although experienced nurses often have in depth knowledge of older people’s health-related needs, the routinised nature of many wards, shift patterns and weak clinical leadership undermine their potential to deliver personalised treatment and care. The author, who is himself a trained nurse, suggests that the key to improving care of people with dementia in acute hospitals is to embed person-centred assessment and values in gerontological nursing practice and accord its development clinical and managerial priority.

Penny Hibberd’s paper describes the role and aims of the Admiral Nurse Academy. The Academy, which started life in 2003, provides a web-based resource for the clinical and academic development of all admiral nurses. Its role is to: facilitate changes to practice development and group supervision; support knowledge development and learning; and regulate the admiral nurse induction programme. The need for admiral nurses to develop a transparent framework of regulating their practice and learning is consistent both with developments in nursing more widely and with recent UK policy emphasis on enhancing the quality of the dementia care workforce. In addition to offering a clinical and academic pathway tailored to each admiral nurse, the academy offers a route for those practicing at an advanced level to ensure their clinical expertise and leadership skills are commensurate with master’s level qualifications. A senior admiral nurse group maintains and oversees the Admiral Nurse Academy.

Joy Watkins and colleagues offer a paper reflecting on two workshops Joy facilitated with three carers, Lorely, Gillian and Barry; they represented Uniting Carers. Lorely Stanton recounted key coping strategies, which enabled her husband, herself and their adult children to reach a gentle quality of life and, for her husband, a quiet dignified death. Barry Saunders highlighted key areas of his caring of his wife Yvonne when he was extremely stressed and feeling unable to accept support. Gillian Lasocki reflected on times when she was dealing with changing behaviour and drew on all her coping skills to continue to care for her mother. The workshops generated a high level of emotion amongst participants and underscored the true meaning of working collaboratively and in partnership with carers. The authors highlight five areas that have implications for dementia care practice: understanding dementia as a complex condition and its impact on the everyday lives of the person with dementia and their carer; recognising that there is always a reason for what appears to be illogical and unreasonable behaviour; keeping well and “maintaining a balance” for the person with dementia and the carer; accepting help; and working in a partnership with health care professionals.

David Wilkie, James Middleton, Alison Culverwell and Alisoun Milne reflect on two workshops that they ran during the conference on a specialist mental health intermediate care service for people with dementia. The service – entitled the home treatment service (HTS) – offers intensive, short-term, flexible input to prevent a breakdown in care whether that be in the community or in a care home; it often works in contexts of crisis and around transitions. It adopts a multi-professional approach, emphasising the value of a shared assessment process, and has a commitment to working within a person-centred framework. In addition to improving user and carer quality of life, outcomes of HTS intervention include a reduction in, and quicker discharge from, mental health hospital and maintaining the person in their existing setting. Focusing on the HTS’s work with care homes, presenters offered case illustrations to highlight its collaborative approach to working with service users, staff, managers and families to improve the quality of life for users presenting with “challenging behaviour” and prevent placement breakdown. Discussion with participants explored the obstacles and opportunities in working productively with care homes. The HTS’s potential to reduce reliance on anti-psychotic medication was specifically highlighted. The importance of including all parties – the older person with dementia, relatives, care staff and professionals – in co-creating “solutions” was identified as one the HTS’s keys to success.

Whilst contributors come from a range of different agencies and represent different perspectives and expertise a number of key messages are common to all six papers. The emphasis all authors place on the fundamental importance of the relationship to all types of dementia care is striking, whether that be in a marriage, in the provision of a nursing service, in a hospital based or residential care setting or in the delivery of intensive intermediate care. That all contributors make a plea for services to prioritise person or relationship-centred care is a linked theme. It is increasingly evident that both a focus on, and investment in, the development of therapeutic relationships is the key to the delivery of personalised care and to the enhancement of quality of life for both the person with dementia and their family carer (if they have one). That this is a resource and time-rich activity is less well acknowledged and at a time of public sector cuts this message is an unpopular one. Despite considerable policy and practice rhetoric around the importance of investing in a dementia care workforce, of living well with dementia in all settings and at all stages of the dementia journey, and of the need to listen to, work with and support family carers it remains clear that without distinctive investment in innovative services, staff training and research things will only improve slowly if at all. We must rightly celebrate the positive examples of good quality care, practice and research that we heard about at the conference. Recognition of the expertise held by people with dementia and their carers is particularly noteworthy. Usually, after a conference one concludes that what is needed is to know more. We conclude that we know quite a bit and what we need to do now is act and act quickly if we are to honour policy goals and practice aims to enhance the quality of life of people with dementia and their carers and deliver positive dementia care.

Acknowledgements

With thanks to the Dementia Services Development Centre South East Partnership, Canterbury Christ Church University, The Avante Partnership and Dementia, UK, for organising this event. With thanks to Dr Adrian Adams and the administration team for their contribution to making this conference so successful. With special thanks to all the contributors, some of whom are showcased in this special issue and finally to all those who took time out to attend the conference especially family carers and people with dementia.

Alisoun MilneReader in Social Gerontology, University of Kent and Honorary Research Fellow, Canterbury Christ Church

Penny HibberdDirector, of Dementia Services Development Centre, Canterbury Christ Church University, UK.