What do carers think is an optimal time for a person with dementia to move to a care home?

1. What do carers think is an optimal time for a person with dementia to move to a care home? Margaret Butterworth Care Home Forum Research team: Kritika Samsi, Jill Manthorpe, Laura Cole Health & Social Care Workforce Research Unit King’s College London 6th March 2019

2. Acknowledgements and Disclaimer We thank all participants for taking part in this research and sharing their views and experiences. We are also grateful to our funders the NIHR School for Social Care Research. The views expressed in this presentation are those of the authors, and not necessarily those of the Department of Health & Social Care, the NIHR, the NHS or its arm’s length bodies.

3. Background to the study Moving to a care home may be difficult decision for some people with dementia and their carers. Studies suggest people with dementia are often not included in decisions, which may negatively affect their ability to settle into the care home. Determining when (if any) is an “optimal time” to make this move may be challenging.

4. Our review of the literature was completed in 2018. Published: 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, pp. 1-22. https://doi.org/10.1017/S1041610218000364

5. Aims of the study 3 year, 3 part, multi-methods study which is investigating: 1. Factors that affect decision to move 2. Drivers of this decision 3. What may be considered an ‘optimal’ time to move

6. Method: Qualitative interviews Criteria: Those who had supported people with dementia and family carers to make the transition to a care home move Social workers (20): 2 men, diverse ethnicity, 5 worked in hospitals Care home managers (20): 4 men, 14 White British Criteria: People with dementia who had moved to a care home in the last 6 months, and their family carers People with dementia (5): 3 men, all White British, residential, self-funding Carers (21): 9 men, 20 white British, 1 sibling + 15 adult children + 4 spouses + 1 adult grandchild

7. Method: What we did • Face to face one-off interviews • Audio-recorded, with permission, transcribed • Analysed using thematic analysis (identifying repeated patterns in transcribed interviews)

8. Overall findings • Decision was difficult and very emotional • Concerns about moving and loss of independence • Carers wanted more support and to know where to go for advice • Many had limited awareness of finances

9. Emotional experience • Stressful, frustrated, guilt, grief • Tended to ruminate on whether they’d done the right thing • Used emotive words like ‘tipping point’ and ‘time had come’ I suppose the thing that really was the tipping point was that she wandered off and one day she was down near the MX junction and a police lady brought her back. That made us think really the ‘time has come’. (RF01)

10. Choosing a care home • Often done in desperate circumstances or emergencies • Transition to care home often lengthy • Things carers valued: • “Feel” of the place • Caring staff • Convenience (location to family, friends)

11. The first thing I thought was… the main front door was open and it said “this door is open from six in the morning until ten o'clock at night. Please come in”. I thought, that's nice, it's an open house, there is nothing hidden. I walked in and immediately I thought, “oh, this is nice”. It was [not] just [that] it looked nice. But you felt a certain atmosphere and warmth about the place. Without it being showy or artificial in any way, a genuine home from home. (RF03)

12. Lack of support • Deeply frustrating not knowing where to turn to • Expected social services to be able to support more, especially if self-funding • Very little support • Social workers would supply a list and direct them to CQC website

13. It's up to you to find a care home and… this is new to me… brand spanking new. We haven't got a clue. So we go to the experts and say, “tell us what to do and tell us who to go to and who is going to be good and who is not and I will pay” and they still say, “No. You've got to sort it out yourself”. I am like “you are the agency that we are meant to be able to come to for help”. Did not get help at all. (RF12)

14. Limited awareness of financial systems (1) • Carers had limited idea of finances, especially if self-funding I had a chat with the manager Ms X and said, look, [sister with dementia] is quite comfortable here. I would like to keep her here. Ms X said, “no, I am sorry, [sister with dementia] hasn't got enough money and the council certainly won't be able to pay enough to keep her here. We are really sorry, you are going to need to find another care home”. The bottom of my world just dropped out. (RF11)

15. Limited awareness of financial systems (2) • Support from care home managers So, they managed to get Mum into some sort of a step-down bed from hospital, which happens to amazingly be in [area where carer lived], so we were able to visit. And they said, “but she can only be there for three days because she’s from out of area”. It’s just dreadful. But fortunately, the care home manager was very helpful and she said, “I’m not going to turn your mum out on the drive, I’m thick skinned, I’ll deal with the commissioners”; so, Mum did have ten days there. (RF16)

16. Is there an “optimal” (or best) time? • Highly subjective and individual • Everyone agreed this was a complex, personal decision • When person with dementia is “ready” or when they realise they can’t cope • Hard balance to strike – lots to weight up

18. The person with dementia is able to take part in the decision making process • “I think it's better to give them the opportunity to adapt into such an environment and they do, they do sometimes.” (SW14) • Eligibility for Local Authority funding problematic; might be easier for self-funders

19. Limited awareness can be beneficial in minimising distress • Waiting for a trigger, but avoiding a crisis • De-skilling environment for older people • “Moving in too early, you are de-skilling someone. A lot of homes, they do things for you. You are in a 24 hour living environment, where they get you up at a certain time, they make tea for you, they make lunch for you. You don't really have that independence.” (SW10)

20. “She was not ready [then] to come into a home. She used to still go out to the shop and get her paper and do all that. Okay, used to leave her credit car all over the place! [laughs] But I think it was the right time for her to go into a home. I think, I suppose we could have done it a few months earlier, perhaps. I think it was alright. That was why it was November and we thought shall we wait until the New Year. No we won’t. We have got to move her.” (RF01)

21. Thank you! Any questions/thoughts? kritika.1.samsi@kcl.ac.uk jill.manthorpe@kcl.ac.uk laura.cole@kcl.ac.uk