Supporting carers of people living with dementia at end of life

Project Background

IMPACT worked with The Hospice of the Valleys in Ebbw Vale, Wales to support their dementia service. The Hospice’s workforce provides comprehensive support to people diagnosed with life-limiting conditions and their families and carers.

The small, but highly skilled, multidisciplinary team is made up of nurses, doctors, social care workers, health care support assistants, benefits advisors, holistic therapists, and volunteers who are able to offer a wide range of clinical, emotional, and practical support to people living with life-limiting conditions residing in the area. Sitting within the hospice is Cariad, a specialist dementia service providing support to individuals and families living with the arising difficulties that come with a dementia diagnosis.

IMPACT Facilitator introduced a decision aid tool developed at University College London to staff and carers, alongside the underpinning academic evidence base. This was part of a local theory of change project to support Cariads in its work supporting decision-making with carers of people living with dementia at end of life.

Grant Usman, Chief Executive at Hospice of the Valleys reflects on hosting an IMPACT Facilitator

Pre-project Evidence

The research informing the decision aid was aimed at supporting family carers of people living with dementia who no longer have capacity to make some of their own decisions. It was recognised at Cariad that many people with dementia in their service did have some decision-making capacity, and therefore the tool, although useful to focus on individual topics for discussion, needed to support a three-way conversation between people, families, and staff. This was a good example of evidence not necessarily giving ‘an answer’ but acting as a route into a further conversation and exploration:

While it is always important to ensure the person living with dementia is empowered to make their own decisions, this may become increasingly harder to achieve as dementia advances. The decision aid prompted a more in-depth discussion on Advance Care Planning between Cariad staff and families. It was seen as an enabling tool to support conversations around end of life.

The IMPACT theory of change project led to the development of a carer needs assessment group. This was identified from local evidence that highlighted gaps and opportunities following implementation of the decision aid.

Facilitator Engagement

IMPACT and the Cariad team at Hospice of the Valleys agreed that the Facilitator would work to understand how effective and timely the decision aid tool was, to identify any gaps in support from a family carer perspective, and identify ways to support future hospice provision for carers of people with dementia.

To achieve this the IMPACT Facilitator:

  • Attended patient reviews and team meetings to identify carers and families to introduce the tool to.
  • Supported staff to reflect on their experience of using the decision aid and other tools that enabled assessment of carer need.
  • Engaged with carers to understand what and when support was needed.
  • Built a strong relationship with hospice staff and carers through planned and informal meetings and conversations.
  • Conducted desk-based research to ensure a wide range of evidence was shared with Cariad, the hospice, staff and family carers.

Project Outcomes

The Facilitator project has delivered positive short-term outcomes and has supported the hospice to put in place work to achieve their aims for medium and longer term. This includes: 

  • An increase in partnership working between Cariad and family carers of people with dementia at end of life  
  • Greater opportunities for carers of people living with dementia to inform the hospice’s work. This led to a reinstatement of the Carer Support Needs Assessment as a direct result of the shared evidence base, including evidence gathered from family carers and staff. 
  • New engagement with key national policy developments and dialogues, including the All Wales Dementia Care Pathway of Standards (Improvement Cymru, 2021) 
  • Consolidation of hospice’s relationship with key dementia and carer organisations in Wales

Project Reflections

Video: Sarah Harries reflection on decision aid tools for dementia