Table 5 Summary of experiences and outcomes from different perspectives

People living with dementia.

Unable to remember preparation.

Disorientated by move.

Feeling unsettled and powerless.

Feeling angry

Excluded from care decisions and decision making.

Feeling patronised and unsettled.

Lack of personal empowerment.

Lack of understanding from staff.

Family support provides comfort.

Family carers

Insufficient preparation

Undermined ability to give informed opinion re planning.

Lack of communication.

Feeling communication could be better.

Appreciation of access to named professional.

Breakdown of communication between family and hospital.

Care decisions made on insufficient information.

HCPs fail to communicate adequately with person with dementia.

Some reported adequate communication attending regular meetings.

Difficulties getting hold of clinicians.

Assumptions made by HCPs about psychosocial needs of the people living with dementia.

Concerns about standards of care.

Some reported reduction in agitation, improved socialisation and health outcomes.

Feeling unappreciated and frustrated when excluded.

Tension and family conflict about care decisions.

Stressful experience leading up to discharge.

Families filling gaps in care system helping with hands on care and advocacy.

Family support provides comfort to the person with dementia.

Health and Social care professionals (HCPs)

Person with dementia feeling stressed.

HCPs feeling pressured.

Unsettling for person with dementia.

Not preparing the person properly, unable to understand event.

Quick transfers, insufficient time to prepare documentation.

No time to organise environment and order equipment.

Transfers late in day.

Stressful experience for person with dementia and family.

Poor start to care home experience for person with dementia and family.

Care decisions made on insufficient information.

HCPs fail to communicate adequately with person with dementia.

People with dementia excluded from care decisions.

Difficulties with individual care planning and providing care continuity.

Affect the ability of the person to settle in new environment.

Judgment of care facility as being inefficient.

Some reported timely and comprehensive information.

Feeling ill-prepared and ill-equipped about how to care for people living with dementia.

People living with dementia returning to facility over sedated

Not having original health care needs met.

Under reporting of behavioural symptoms.

Insufficient workforce to provide care.

Conflicts of interests between family members and person living with dementia.

Smoother transition when working with families.

Working with family members could be difficult.