The quality of dementia care can be enhanced by ensuring that staff understand the role of the dementia link worker and own the care approach they are using
In this article…
- The role of dementia link workers
- Creating a person-centred care pathway
- How managers can empower their staff
Mary Keating is a senior dementia education nurse at 2Gether Foundation Trust. Jackie Long is a senior carer/dementia link worker; Jodie Wright is a manager/dementia lead, both at Mill House Care Home, Gloucestershire.
Keating M et al (2013) Leading culture change to improve dementia care. Nursing Times; 109: 8, 16-18
This article discusses elements that contribute to ownership in dementia care, which, in turn, can add to our understanding of what dementia leadership is. A training programme - the Dementia Leadership Award - aimed at care-home owners, managers and clinical leads throughout Gloucestershire is creating a person-centred, staff-centred work environment. The approach is bringing about a shift in culture whereby managers of care homes and other personnel understand the importance of the dementia link worker role, support the advanced training these team members undertake, and appreciate their own significant impact on the quality of care delivered to people with dementia.
- This article has been double-blind peer reviewed
- 5 key points
- A person-centred approach to care is key to the health and wellbeing of people living with dementia
- Person-centred care cannot be achieved unless staff understand their work and feel enabled, skilled and supported
- Training alone is not enough to improve dementia care; care-home culture may need to change and adapt
- The Dementia Leadership Award enables care home managers to better understand the role of dementia link workers and support them
- A staff-centred approach enables collaborative working, through which staff are valued and take ownership of their role as carers
Living longer is a reality for many of us but will our health and social-care provision be able to meet our needs? The proportion of people with dementia living in care homes rises steadily with age, from 26.6% of those aged 65-74, to 60.8% of those aged 90 and over (Alzheimer’s Society, 2007).
The predicted shortage of skilled workers, in addition to society’s loss of community and family networks, present something of a challenge in meeting the needs of this group, particularly as it grows as the population ages.
According to the National Institute for Health and Clinical Excellence (2006), a key value underpinning the health and wellbeing of people living with dementia is a person-centred approach to care. However, true person-centred care cannot be achieved in practice without making sure health staff understand their work and feel enabled, skilled and supported.
Ownership appears to be a key element in providing high-quality dementia care; this means not just ownership for the proprietors or managers but also for the staff who deliver the care. The environment in which care is delivered and the decisions that need to be made with managers, families and residents (such as care planning, and the way the service will develop) are just some areas in which care-home staff need to feel a sense of control or empowerment to improve and sustain high-quality dementia care.
Dementia link worker role
Gloucestershire’s multiagency training and education (T&E) strategy group has developed a dementia link worker (DLW) role in care homes in the county to promote best practice in dementia care.
The DLWs can pass on skills and knowledge, gained through specialised training, to their peer group within their own workplace, using structured onsite learning resources developed by the T&E group. Specialised training has been offered in the form of the Dementia Link Worker Award since 2008; this leads to an accredited certificate in dementia care, and is now available to anyone who works with people who have dementia. Fig 1 provides a brief overview of the course content.
We evaluated the course and the DLW role after the first year. Although it was evident the course and role improved dementia care (Box 1), we discovered that more than 45% of DLWs were frustrated at the lack of understanding of their roles, and at not being used as a dementia-care resource within the work environment by their managers and co-workers. It became clear that two objectives of the national dementia strategy (Department of Health, 2009) would not necessarily be achieved through training alone. These were:
- Objective 11 - improve the quality of care for people with dementia in care homes; and
- Objective 13 - an informed and effective workforce for people with dementia.
It appeared that the culture of the care home may need to change and adapt to bring about sustained positive outcomes.
Dementia Leadership Award and ownership
In response to feedback received from the DLWs, the Dementia Leadership Award (DLA) was researched, designed and offered to care-home owners, managers and clinical leads in Gloucestershire. This group have the autonomy and the power to support changes to the care approach and, at the same time, influence the care culture.
Dementia care is underpinned by Kitwood’s (1997) model of person-centred care, in which care is centred around the person receiving it. We decided to expand this concept to cover everyone involved in this care. The DLW, clinical leads, managers, family and carers - indeed everyone who is part of the dementia care pathway - need to feel that they, and what they do, matters. Manley et al (2011) suggested that, as well as the above, leadership involves finding ways of identifying the effectiveness of the interactions. This knowledge helps leaders to sustain care and remain responsive to changing individual needs.
In May 2010, the first cohort of 25 people attended the Dementia Leadership Award workshop. There were two main themes running through the course: staff-centred care and dementia knowledge. The content covered:
- Risk enablement;
- Greater understanding of the pathology of the disease;
- How this affects our understanding of behaviour; and
- Having the confidence to take a creative approach to care.
We assumed staff in senior posts knew a great deal about dementia but we were proved wrong - more than half of the participants in the group felt they did not know enough about dementia themselves and, as a result of this, had not valued or understood the role of the DLW. Some participants were just beginning to see how the DLW role could create an informed and effective workforce and how, as leaders, they could make the most of this.
To deliver person-centred care for people who are living with dementia, staff-centred care must also be delivered. How can we expect care staff to give without making sure they also receive, not only from their residents, clients or patients, but also
from organisations, management, families and colleagues? This approach to care creates meaningful wellbeing experiences for everyone.
Initially, some participants blamed DLWs for not communicating effectively enough with management/leaders about their roles. Others voiced disappointment that individual DLWs had received training yet did not appear to have made any significant changes in the workplace to improve care. Some said that one of the reasons
for going on the dementia leadership course was because they felt responsible for delivering those aspects of good-quality care that they thought the DLW could not administer.
By sharing evidence with the group about the emotional impact of caring for a person with dementia and the effect it can have on care staff (Milwain, 2010), or the benefits of supporting staff so they continually receive visual compliments in the form of graphs or posters that document their achievements and praise (Ashton, 2011), the group began to rethink their judgements of their staff.
Box 2 gives an overview of how one participant gained ownership in her role as a care-home manager. By acknowledging her own development via the DLA course, Jodie gained inclusion and recognised the contribution made by the DLW, Jackie.
While training alone may not be enough to bring about change that is visible and sustained, getting the course material right and creating the right learning environment can help. The dementia training pathway for DLWs and the DLA is continually being revisited and changed to meet learning needs, and this has perhaps added transparency and continual evidence that the content is correct. Jodie acknowledged that the resources she gained helped her focus on the direction she needed to take her team and gave her the tools to do this.
Communication is central to everything; people get things right and wrong in care depending on how they do or do not use this skill. Listening, talking and, most importantly perhaps, “hearing” contribute towards effective communication. Jodie demonstrated that she was using transformational leadership skills as defined by Stordeur et al (2001). However, dementia leadership is possibly also about shared visions - if we can all see the same thing at the same time, we can start to take some ownership of what we are doing.
A staff-centred approach is essential to develop a person-centred approach to care for people living with dementia. It is said that we all practise person-centred care but this means nothing if staff do not feel central to the organisation’s philosophy, do not feel valued or are not able to contribute to service development.
We need to make sure everyone on the team has access to equal contributions, receives equal compliments and has equal work empowerment. The wellbeing of everyone - people with dementia, carers/families, staff and management - depends on them all feeling valued, respected, significant and productive. Without this approach, dementia care can become a meaningless task in which personhood is lost and replaced by dehumanised actions that are destructive and can cause distress.
Being open about what the care home or service is working towards is essential, and everyone on the team should understand and own this. Dementia leadership is perhaps most successful when the leader has taken the time and effort to make sure the whole team or organisation can see where they are going, how they will get there and the rewards that will be gained on reaching the destination.
Alzheimer’s Society (2007) Dementia UK: The Full Report. London: Alzheimer’s Society.
Ashton S (2011) Using compliments to measure quality. Nursing Times; 107: 7, 14-15.
Department of Health (2009) Living Well with Dementia: A National Dementia Strategy. London: DH.
Kitwood T (1997) Dementia Reconsidered: The Person Comes First. Maidenhead: Open University Press.
Manley K et al (2011) Person-centred care: principles of nursing practice. Nursing Standard; 25: 31, 35-37.
Milwain E (2010) The brain and person-centred care: a deeper look at emotions in dementia. The Journal of Dementia Care; 18: 4, 20-23.
National Institute for Health and Clinical Excellence (2006) Dementia: Supporting People with Dementia and their Carers in Health and Social Care. Clinical Guideline 42. London: NICE/Social Care Institute for Excellence.
Stordeur S et al (2001) Leadership organisational stress and emotional exhaustion among hospital nursing staff. Journal of Advanced Nursing; 35: 4, 533-542.