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Let’s Talk – Moving a Loved One Living with Dementia into a Care Home

Jo Crossland, Head of Dementia Care, leads Avery’s memory care services, has developed ReConnect, a comprehensive memory care strategy, which includes a bespoke, 5-stage training pathway for staff, and works with colleagues across the organisation to ensure that best practice in dementia care is reflected in all areas. Here, she talks about her PhD research.

Dementia Care Research Project Background

I began my caring career as a teenager in the local nursing home in the village in the Yorkshire Dales where I grew up, going on to qualify as a registered nurse, always with the intention of returning to the care home sector. During this time, my grandad also developed dementia, and although it’s over 28 years since he passed away, I have never forgotten the devastating effect that dementia had on our family. Although I don’t think I ever had a formal plan, my family’s experience has largely shaped and guided my career for over 30 years in various roles in the field of dementia care across the health and social care sector and in higher education. I believed that my academic learning was complete after studying a BSc and an MSc in dementia studies over a decade ago. However, an ongoing need to understand more about how we can support families caring for a relative with dementia, particularly during the transition to a care home, led me to finally admit that a PhD was the next natural step for me.

Although care for people with dementia has improved significantly over the last few years, family members caring for a relative with dementia at home still don’t always receive the help they need. When a decision has been made that a person with dementia can no longer safely remain at home, families are tasked with finding a suitable care home, often at short notice and frequently amid a period of additional stress, for example, due to further deterioration in their relative’s health, or due to a health crisis involving a member of the family. With support particularly lacking during this time, there is little wonder that families frequently report this being a period of immense additional emotional strain.

Before we can understand the type of interventions that care homes could put in place to support individual family members during this period, we must first understand much more about how different family members experience this time of transition. This includes understanding the type of support individuals within a family unit believe would be most beneficial to them and understanding whether family members’ support needs change at different times during this trajectory.

Approach to Dementia Care Research Project

Existing research identifies that many family members of people living with dementia feel unprepared for their relative moving to a care home. Research also identifies that families can experience a range of emotions, from a sense of relief that their loved one will receive the care and support they now need to feelings of guilt. Previous research studies that have explored family member experiences leading up to a relative with dementia moving into a care home universally recognise the need for information and support at this time. Reflecting on this existing body of research, my study focuses on identifying the type of information and support that family members identify that they need during the moving-in period and in the early weeks and months of their relative living in a care home.

I am concentrating focusing my study within three care homes in the Avery group. For the past six months, I have been interviewing staff and family members to understand the first-hand experience of family members when their relative with dementia moves into a care home.  Although my role as the Head of Dementia Care at Avery involves me having very regular contact with staff working in our homes and, in some instances, with families, to make sure that my research is as unbiased and impartial as possible, I am following well defined and very clear ethical guidelines to separate my two roles; employee and PhD researcher.

I plan to continue my research study by conducting more interviews and by gathering other evidence, including existing information and copies of blank documents for the next year, to make sure that I have sufficient data to be able to make recommendations on how we can develop a supportive intervention to help family members during their relatives move to an Avery care home.

Dementia Care Research Project – Initial Findings

I have been very fortunate that all of the participants I have interviewed for my research study to date have been very generous in sharing their thoughts, feelings and experiences. Staff members that have been interviewed also recognise the huge impact that the covid restrictions that were in place for such a long time have had on family members.

As one staff participant commented:

“I try so hard to allay their [family members] fears because they are often so worried and even frightened about leaving their loved one with us. And during the pandemic, it was even worse because visiting was restricted. It was just awful.”

A number of staff also talked about some of the preconceptions that family members can have about care homes:

“I know that we had to restrict visiting during the pandemic, but it’s surprising how many [new] family members believe that we have all sorts of rules and regulations that they have to follow. We spend a lot of time reassuring new families that they can visit whenever they want to and that their relative can continue to do what they’ve always enjoyed doing, even if we have to adapt stuff a bit.”

Family members who have agreed to take part in my study have spoken about the mixture of emotions that they have experienced during the period of their loved one moving into a care home:

“it felt a bit unreal, you know? Like we were on this journey that we’d never made before, and we didn’t know where it would end.”

“the guilt was awful…I mean they [participants’ parents] always said, ‘don’t you put us in a home’, and yet here I was.”

It has been very clear from the interviews that I have undertaken so far that staff are committed to wanting to support families in the best way possible during what they recognise is often a very emotionally challenging time.

Intended Outcomes of Dementia Care Research Project

As well as analysing my existing research data, I plan to continue collecting more data during interviews with both existing and new participants over the coming year. Once this data collection part of my research study is complete, with support from my PhD supervisor and my Director of Studies at Leeds Beckett University, I will continue to analyse the evidence I have gathered to identify important topic areas and themes. From this, I will use my findings to make recommendations about how care homes can improve the support offered to family members when a relative with dementia is moving into a care home.

Once my PhD study is completed, I will work with a group of colleagues and, where possible, with family members at Avery Healthcare to develop an intervention that staff can access in our homes to support families during the period of their relative moving into their new home. A number of key points are already emerging from listening to participants in my study that will be crucial in making sure that any intervention or supportive resource has the best chance of meeting the needs of families during such an emotionally challenging time:

  • It must be easy for staff to access and use without needing significant additional training
  • It must take into account that different family members often have different needs and preferences for support
  • It must not assume that family members understand how a care home works or the support that is offered.

As one family member that I spoke to commented:

“I wanted to care for them [participants’ parents] forever, you know? And here I was, moving them into a care home. And I had no idea how things worked. You know, it was all very new to me. They [the staff] were so good and said whatever questions you have just ask. But that was just it. I didn’t know what I was supposed to ask. I was totally in the dark.”

I hope that the intervention that I develop at Avery will go at least some way into making what is often a very obscure path clearer and less arduous.

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If you are looking for more information or advice about moving a loved one living with dementia into a care home, Jo is running a virtual round table session at 7.00pm on Thursday, 27th October. Please email angela.bailey@averyhealthcare.co.uk to book. Places are limited, so early booking is advised.

You can submit any questions privately before the meeting or join to listen and ask questions as they come to you.