Fatima Mujtabah, right, recently graduated from King’s College London in Adult Nursing. (797 words)
Dementia Palliative Care and Homecare Workers
Dementia is a term used to describe a range of conditions affecting the brain that get worse over time. With no cure, dementia is a life-limiting condition, but few people recognise this. As such, the care needs of people affected by dementia are not always met. It is reported that around 90,000 of people diagnosed with dementia require formal social care and about 2/3 of this population live and die at home. This highlights the importance of homecare in the provision of high-quality palliative and end of life care. Yet, current research shows that people with dementia who live at home are more likely to receive poorer quality end-of-life care compared to those in formal care settings such as care homes. Homecare workers have a central role in allowing people to die within their own homes.
Homecare workers are paid skilled workers who provide support with activities of daily living such as personal and domestic care to clients in the community. They are also often a great emotional support to housebound patients and their families. Their proximity to clients in the community enables them to recognise crucial care needs and the most feasible way to meet them. They can play a key role in working with family members and other care practitioners, which is important for communicating clients’ needs and wishes. Despite this, homecare workers still face several challenges to delivering high quality palliative and end-of-life care. A multitude of reasons are responsible for this, including limited formal training, their isolation from other healthcare practitioners, and the emotional labour of caring for end-of-life patients.
What interventions have already been tested to help homecare workers?
I’ve recently been involved in the literature search of interventions that aim to support homecare workers with providing palliative and end-of-life care. We found a limited range of interventions, including training and education, supervision, peer support, and different toolkits. Some addressed interprofessional working to reduce the isolation of homecare workers and the lack of emotional support for homecare workers. Training interventions focused on improving the knowledge of palliative and end-of-life care of homecare workers so that it is translated in their practice. However, implementing different interventions was limited by several factors. One recurring factor was limited engagement from homecare workers due to barriers such as their working patterns and the relevance of the intervention to their role in providing palliative care. For example, the implementation of toolkits to help with symptom assessment was generally received well by homecare workers, but some of its elements were not seen as relevant to homecare workers which posed as a barrier to engagement.
Introducing the Integrated Palliative Care Outcome Scale for Dementia (IPOS-Dem)
Person centred outcomes measures are standardised questionnaires which measure an individual’s symptoms and concerns. One example is the Integrated Palliative Care Outcome Scale for Dementia (IPOS-Dem), which takes a holistic approach to assess the physical, spiritual and psychosocial symptoms of dementia and improve personalised care plans. It has been used by practitioners working in formal care settings such as care homes, although it has not been used in homecare settings yet.
PALLDEM-Homecare is a new project that aims to test the use of the IPOS-Dem with homecare workers. Based on the findings of our scoping review, plans to implement the IPOS-Dem will need to consider the demanding nature of the job of a homecare worker, the simplicity of the tool being implemented and its relevance to the role, and homecare workers’ isolation from other health and social care practitioners.
What does all this mean for homecare workers?
Caring for people facing the end of their lives can take a physical and emotional toll on practitioners. Working in an underfunded workforce where there’s little support from the wider health and social care team can lead to burnout, an increasing dissatisfaction with the work and high staff turnover. This can cause a cascading effect on the standard of palliative and end-of-life care that people with dementia experience in the community. Providing homecare workers with the knowledge and tools they need would better support them in this challenging role and help to maintain high quality palliative and end-of-life care for people with dementia living at home. It is hoped that the PALLDEM-Homecare project will offer one way to do this.
About the author
My name is Fatima Mujtabah, and I’ve recently graduated from King’s College London in Adult Nursing. I am completing an undergraduate research fellowship at the Cicely Saunders Institute for Palliative Care, Policy, and Rehabilitation, King’s College London. During my fellowship, I’ve been involved in a scoping review on contextual factors that impact the implementation of interventions to support homecare workers provide palliative and end-of-life care.