Table 2 Summary of themes and sub-themes for context, mechanisms and outcome

Context

Business driven care homes

• Profit prioritised over care quality

• Lower staff salaries and lowly skilled care staff

• Minimal staffing levels

• Poor staff conditions

• Increasing turnover of staff

• Negative image of care homes and low prestige working in care homes

• Demanding workloads

• Staff have limited time

Complex network of health and social care providers

• Multiple agencies to make referrals to and communicate with

• No option to make direct referrals from care home

• Long waiting times for some services

• External HCPs who are proactive and helpful in providing care to people with advanced dementia

Societal and family attitudes towards care home staff

• Negative perception of care homes

• Recognition that care home staff work hard

• Lack confidence in care home staff

Staff training, experience and reflective processes

• Lack of training/experience in dementia care

• Post-death reflections

• Beneficial to prepare staff for end of life care and to provide exposure to end of life care

Governance and regulation of care homes

• Highly regulated

• Excessive documentation and scrutiny

Complexities of providing care in advanced dementia

• Long trajectory and unpredictable prognosis

• Challenging to manage symptoms due to the communication difficulties

• Difficult to understanding the relationship with palliative care

• Palliative care services not equipped to manage behavioural symptoms of dementia

Advance care planning

• Proactive Advance Care Planning on admission

• Importance of involving GP and family in these discussions

Staff personality/characteristics

• Compassion

• Motivation

• Initiative

• Finding the job rewarding

Mechanisms

Level of HCPs confidence

• Confidence/uncertainty about best approach to end of life care

• Fear of litigation

• Fear of death (avoidance)/Accepting (comfortable with dying/death)

Family uncertainty about end of life care

• Confusion/uncertainty regarding end of life care decisions

• Family avoiding discussions regarding end of life

Resources for improving end of life care and supporting families

• Admiral nurses

• Post-death reflections

CCGs uncertainty about whether dementia specific palliative care is required

• Uncertainty as to whether specific dementia palliative care services are necessary

Outcomes

Psychosocial and spiritual care

• Beyond meeting basic physical needs

• Person-centred approach

• Spending time with residents

• Treated with dignity and respect

• Being seen by a religious figure e.g. priest

Supporting and developing relationship with family carers

• Collaboration between family and care home staff

• CH staff getting to know the family and obtaining trust

• CH staff helping family and carers prepare for their relative’s death and discussing grief

• CH staff providing support

Addressing physical needs

• Symptom management (particularly for pain)

• Reducing burdensome interventions, hospitalisation and resuscitation

Continuity of care, integrated care and multidisciplinary care

• Good working relationships across services

• Regular staff who get to know individual needs of residents