Investigating "optimal time": Multiple perspectives on the timing of moving into care homes by people with dementia

Introduction

Moving to a care home is sometimes perceived as a last resort for someone living with dementia, with limited options and low expectations of care. A move is cloaked in negative terminology in the media, and practice and research literature; and the person living with dementia is often seen as passive, with words used such as “placed” and “abandoned”. Many older people, people living with dementia and the general public fear moving to a care home.

With increasing numbers of older people living with dementia and predictions that there will be declining numbers of family carers, deciding when the right time is (if any) to move to a care home is an important question.

Objectives

This three-year study was conducted addressing the following questions:

1. What factors in the decision-making process led to a person living with dementia moving to a care home?
2. What is the role of the person living with dementia in the decision; role of family or carers? What is the role of care home managers?
3. “Optimal time”: What do professionals advise carers and people living with dementia about the best or optimal time (if any) to move to a care home (‘early’ to ease ‘settling in’ or as late
   as possible)? Do people living with dementia conceptualise an ‘optimal’ time? What are their experiences and beliefs around timing of this move?

Methods

The study was carried out in three parts:

• A thorough search in six English language electronic databases was conducted to identify gaps in understanding. Sixteen relevant papers, and seven overall themes were identified through thematic analysis and data extraction
• Qualitative interviews were carried out with: 21 family carers, 5 residents living with dementia (who had recently moved to a care home), 20 social workers working with people living with dementia, and 20 care home managers
• A factorial study was carried out based on the findings from the literature review and qualitative interviews. A ‘skeleton’ short case story about a fictitious person living with dementia was developed; 54 possible stories were constructed, and a survey in which each variation contained seven randomised case stories asking: “would you suggest that Jane move to a care
  home or continue living at home?” A total of 100 surveys (the target number) were completed by dementia practitioners in the position of making such a recommendation.

Findings

• Best or ‘optimal time’ (if any) for a person living with dementia to move to a care home is individual, not necessarily related to symptom severity
• People purchasing their own care have some scope for choosing timing of a move, but many decisions occur at times of crisis or distress
• Care home place availability influences decision-making; linked to the home’s proximity and perceptions of quality
• Many relatives feel they shoulder the burden about deciding on a move and its timing – and receive little information or advice to help them
• Some people living with dementia have made their views known about moving to a care home and this helps relatives with decision-making
• Care home managers report often counselling relatives about the processes of a care home move.

Resources

Journal papers

Cole L, Samsi K, Manthorpe J (2018) Is there an “optimal time” to move to a care home for a person with dementia? A systematic review of the literature, International Psychogeriatrics.

Presentations

Cole L (2018) ‘Do social workers consider there to be an ‘optimal’ time for a person with dementia to move to a care home?’ Workforce perspectives on the care and support of older people in England, King’s College London, 25 April.

Related publications

• Investigating ‘optimal time’: Perspectives on the timing of people living with dementia moving into care homes
  ( https://www.sscr.nihr.ac.uk/wp-content/uploads/RF88.pdf )