Dementia care – a positive future: a postscript

Citation

Colyer, H. (2011), "Dementia care – a positive future: a postscript", Quality in Ageing and Older Adults, Vol. 12 No. 2. https://doi.org/10.1108/qaoa.2011.55912baa.003

Dementia care – a positive future: a postscript

Article Type: Dementia care – a positive future: a postscript From: Quality in Ageing and Older Adults, Volume 12, Issue 2

“No decision about me without me” is one of the foremost policy mantras of the current government in relationship to the organisation and delivery of health care. Certainly this includes people with dementia and their carers. The policy ambition for dementia services is laid out on the “National Dementia Strategy”, a document which argues for the importance of person-centred care in driving the direction of support throughout the person’s “dementia journey”, the importance of effective and timely intervention in enhancing quality of life and the need to adopt a whole systems approach (Department of Health, 2009). The conference at Canterbury Christ Church University held in May 2010 throws down a gauntlet by calling for dementia care to have a positive future. The papers in this special issue, drawn from that exciting and stimulating event, offer a range of interesting insights into dementia care written from a range of personal and professional perspectives.

A key theme of the conference is that to be genuinely person-centred one must also pay attention to the context of care and to relationships between the person with dementia and their carer as well as others who play a role in the person’s life. The speakers and workshop leaders all emphasised the importance of adopting an empathic approach in work and care. Reading Barbara Pointon’s paper, I was filled with admiration at human beings’ capacity for enduring love. During her 16-year journey being her husband’s carer, there were many low but also many high points; she argues strongly that the essence of her husband remained intact until he died. She argues that both formal and informal carers must make and maintain a relationship with the person with dementia in order to be able to provide good care: without this she claims professional competence is nothing. Although health professionals are aware of the importance of making a relationship with their patients, this often rests on some sense of mutuality; in other words, getting something back. A person in the final stages of dementia may not be able to give us much back, at least, not in the ways we have come to expect. Yet, as Barbara reflects so powerfully, they are no less of a person.

Joy and colleagues add a richness to Barbara’s discussion by highlighting the quality of relationships between professionals and the difficulties of working inter-professionally. This is another long-running theme of policy and research over the past 20 years. At the heart of these difficulties is frequently a lack of respect for the expertise and contribution of carers and family members. Yet there can be no genuine person-centred care without this respect. Genuine partnership working includes the involvement of service users and their carers in respectful decision making and for people with dementia the often devastating effect on the family carer is an equally important component in determining care and planning interventions. Another key message from carers at the conference was for those who commission and provide services to recognise the need for advice and support for patients and carers that is timely and personalised.

Penny Hibberd reminds us that Admiral Nurses are an expert professional resource for families and professional care workers alike, offering advice, support and models of good practice. The development of the Admiral Nurse Academy should ensure that their knowledge remains at the leading edge of practice development and that they have the relational skills to offer empathic and informed support at all stages of the person’s dementia journey. The academy will also offer Admiral Nurses the opportunity to build up portfolios of evidence which they can then submit for continuing professional development purposes up to the equivalent of masters level.

The conference heard from members of the Home Treatment Service (HTS). This is a specialist mental health intermediate care service for people with dementia and their paid and family carers. They offer person-centred assessment and short-term intensive intervention usually at a point of crisis when a carer, or care setting, is about to breakdown. The HTS workshops illustrated how they work with people with advanced dementia living in a care home, their families and care home staff by using case examples. Their paper (Wilkie et al.) demonstrates a commitment to collaborative working throughout the intervention, the inclusion of carers and care staff in explaining the “problem” and developing the “solution” and the engagement of staff in owning new ways to work with the service user both now and in the future. The paper advocates that working positively and intensively to build rapport, promote wellbeing and offer advice and practical support can deliver genuine improvement in quality of life and care for all involved.

Alisoun Milne offers a comprehensive review of the range of ways in which researchers have attempted to capture the experiences of people with dementia living in care homes. Up until recently, research has privileged objective “measures” of quality of life and care marginalising the perspectives of users. Although work developed via questionnaires, interviews and observational approaches – especially using dementia care mapping – do provide insights into the experiences of care home users, they fail to capture their lived experience. Work that adopts a phenomenological methodology has shown powerfully that people with dementia living in care homes can construct narratives about themselves and do retain a sense of self and identity. Pertinent themes around what matters to care home residents are: the importance of social and family roles and relationships, the need to care and be cared about, and a deep sense of loss, frustration and sadness associated with having dementia. The paper concludes that this new addition to the research repertoire offers the opportunity to extend understanding about care home experiences and how to improve life quality and care practice.

People with dementia are no less likely to become physically ill than other older people and many find themselves in an acute hospital setting. Nurses and others, who work in hospitals tend to have little preparation for dealing well with patients with dementia. Jonathan Webster shares the results of an action research study, which explored the role and value of developing person-centred assessment and care in a hospital environment. He argues that by adopting this approach not only are nurses better able to relate to patients with dementia but are capable of more effectively tailoring care interventions based upon the person’s life history and patterns of day-to-day living. The patient is also more settled and less disruptive on the ward.

The conference was a major success. The publication of this special issue offering a collection of papers drawn from the event will ensure that its key messages reach a wider audience. The practices and insights shared in these papers are a cause both for celebration and challenge. Celebration because it is apparent that the needs of people with dementia and their carers are (finally) being acknowledged and, in some situations, addressed, leading to real improvements in peoples’ quality of life and care. It is also a huge challenge because there is still much to do before “dementia care – a positive future” is a reality for the majority of people with dementia and their carers.

Hazel ColyerDean of Faculty of Health and Social Care, Canterbury Christchurch University, Canterbury, UK.