The journey of older people’s care moves

Better Care Moves: The Journey of Older People's Care Moves

All of us experience transitions throughout our lives. As we get older, many people will experience transitions into and between social care settings. For example, moving from their own homes into retirement housing, housing with onsite care and support, or into a care home. Even being discharged from hospital and receiving social care for the first time in one’s own home is an important life transition. All these moves affect older people, and their family and friends, on multiple levels: emotionally, psychologically, socially and financially. Social care practitioners – including social workers, care managers, care coordinators and staff, have a significant role in supporting older people and their family and friends through these moves. It is vitally important that they understand the challenges that older people and their carers face during the journey. This video, based on research evidence and close working with older people and their families, introduces the challenges people face and provides recommendations for good practice.   First, Before the move
  • Just like people arriving at a train station, some may have advice and information beforehand, for example, during care needs assessments or care plan development. Others may feel lost and overwhelmed, without proper signage or staff. Many moves happen with little preparation or notice, making the process even more challenging for older people and their carers.
  • Some people pay for their care while others receive publicly funded care. The complex funding arrangements and financial burdens can be difficult to navigate and understand.
Second, During the move
  • There are different care and housing options available, such as traditional care homes and extra care housing.
  • People may also experience multiple moves as their needs change.
  • Practitioners in various roles and organisations play crucial roles throughout the journey. However, it can sometimes feel like people are speaking in different languages. People working in different parts of the system do not always communicate well with each other and the older person and their carer often feel unheard.
  • Like trains, delays and frustrations are common.
 Lastly, After the move
  • Moving can be traumatic for both older people and their carers, causing feelings of loss, around independence, dignity, and relationships.
  • Carers sometimes feel their role and relationships are not valued or recognised after moves to new care settings. 
So, how can we ensure good move-related social care practice? First and foremost, good practice should always be person-centred, identifying what this individual wants. Practitioners need to understand the diverse settings and multiple routes along the journey, and be considerate of the challenges older people face. Moves can be more challenging for people with protected characteristics, such as people with dementia, Black, Asian and other Ethnic Minority groups, and Lesbian Gay Bisexual and Transgender groups. Each person’s moves should be handled with sensitivity. Remember, it’s not just about the individual, it’s also about the family and friend carers. Ultimately, communication is key. Practitioners should provide timely information and advice on when and what the options are, and discuss the potential consequences of each option with a clear timeline. Knowing and understanding the options can empower older people and their carers to make proactive decisions, leading to a smoother move. To learn more on how to better support older people and carers during care moves, please visit our project website for more resources. This video is produced by the Better Care Moves co-production team: Public members video ending: Contributions from public members of the Better Care Moves co-production team: 4 names. Contributions from Julia Greig, practitioner researcher, Better Care Moves co-production team.
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Here we talk to older people, family and friends, and social care practitioners about the challenges of moving between care settings for older people. People talked about feelings of guilt and worry and not being listened to. They also spoke about issues with communication and trust, practical help and information, and the issue of having to move more than once.

Feelings of guilt, fear, worry and not being listened to

Older people found it challenging to make decisions regarding moving and to look for information and advice. It can be even more challenging for people with dementia to make decisions or understand and process information from diverse sources.

Supporting moves has been reported to be a very stressful and exhausting process for family and friend carers. They especially struggle to ‘let go’ or experience feelings of guilt for facilitating the moves. This can impact on their physical health and mental health, as well as relationships between family members. Many carers told us that one of the most frustrating situations for them was that health and/or social care staff do not listen, care or inform carers about older people’s move related issues.

A 91 year-old woman explained she feels guilty about having encouraged a friend to go into a care home, which turned out to be unsuitable.

“The thing I think I feel most strongly about … is how guilty I feel in having facilitated, assisted, encouraged, talked through, somebody going into a home, who afterwards we find the home is not what we hope it is to be.”

A woman, caring for her husband with mild dementia, was upset because the staff didn't inform her about his move, causing distress for both of them.

The last place he moved from was very good. They informed me that he was going to move. And they informed me when he was moving. But the previous moves, no, in fact I went to see him on one occasion and he was very distressed. He said, ‘I don’t know what’s happening.’… my husband also has mild dementia and very often they tell him things or question him and he really can’t cope. He’s used to saying to people, “Can you talk to my wife?” But I’m not there. So on this occasion I went and asked to find out what he was upset about. And it was, in fact, that they were going to move him. But they told him but they didn’t tell me.
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Communication and trust

People said that effective communication and trust between practitioners and older people and their carers was key when supporting the moving process.

One man told us that he would like advice on how best to talk to his mum.

“[The challenge is] not having professional advice on hand as to how to speak with my mum… We tried to be as sensitive as possible. But […] we’re just not professionals. It was just learning as you go with the whole way. We didn’t know the way in which to talk to her and we still don’t.”  

 

A discharge coordinator tries to put themselves in the family’s shoes and make sure they have all the information.

I think a lot of it is managing people's expectations and managing people's anxieties as well. Obviously, we get families are very anxious. We totally understand that. So I look at it, what would I want for my mum? It's the same as sort of like any interaction from a professional, how would I like that professional to speak to me, you know, and the contact with that professional as well… families have got to – have an identified contact person, they've got to be given all of the information about our processes
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A dementia café lead talks about the importance of trust when talking about a decision to move to a care home.

“Building trust is really important, especially when it’s at – well, it’s a big decision about moves, it’s really a difficult decision and they need to talk with someone they trust, rather than who just pops in.”

Practical help, information and advice

Going through the complex process of moving, older people and their carers also require practical help, information and advice, for example, about the logistics of the actual physical move on moving day and the assessments that are required.

A person who was caring for a parent had difficulties in finding professionals to talk;

“Building trust is really important, especially when it’s at – well, it’s a big decision about moves, it’s really a difficult decision and they need to talk with someone they trust, rather than who just pops in.”

A 64 year old disabled man talks about trying to arrange a removal company.

I asked for recommendations about removal people and I looked at three and to be honest, I thought, ‘I'm not going to get all excited about who's going to move me. You know, let's just choose one.’… on the day, it’s going to be a nightmare because there's all this disconnection of the white goods… But I suppose there’s all that. So, it’s just the physical logistics and not having any help with it
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Some also highlighted that some of the transition points are especially challenging. For example, divisions within the health and social care sector lead to scattered information and a lack of cross-team communications.

Multiple moves

It is also very common for older people to experience multiple moves between home and care settings in later life.

A woman caring for her husband with mild dementia said that he was moved 5 times in a short space of time and was very distressed

He was moved from A&E into an interim ward in this hospital. He was then moved into a ward for elderly men then he tested positive for Covid, so he was put in an isolation ward. And then, with no explanation to him or me, they moved him a long way away from here to a private care home for recuperation. And again, he was isolated and he was very distressed…I was finally allowed to visit. I got the room reorganised so it was better for him and then they moved him again to [another town] so he’s now closer to me. But again, he’s got to get used to the place and they’ve got to get used to him. So it’s been very unsatisfactory to have all these moves.
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A care home manager talks about the need for hospitals to communicate better with the home when discharging a patient to a care home, so that proper planning can take place.

[The hospital] rang me probably about ten to five to say that she was coming into the home that day. The hospital didn’t know that we were a new home, so they were going to send her out with no medication… it is very unfair to expect night staff to welcome in a new person because they haven’t got the staff to sit with that person, ease them in, reassure them…There needs to be more communication from the hospitals in easing that person.
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This became a significant problem during the COVID-19 pandemic when social care teams were moved out from hospitals, and were not involved in hospital discharge decisions under the Discharge to Assess pathway. The role of social care practitioners who used to be based at hospitals has significantly changed in this context, as they can only conduct assessments regarding the person’s social care needs after patients have been discharged home or to a care home.

A discharge coordinator talks about how the process changed during the height of the pandemic.

We were, prior to Covid, working in the hospital, as part of the social services team. So it was then assisting people in the journey in hospital, as to discharge, you know, where they were going […] then, and obviously with Covid, which we've had for over two years, it's been a very different pathway for people in hospital now because social services are not the lead in discharges, it is down to the hospital.
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The experiences people shared with us suggest that a lack of communication and cross-team/sector collaboration leads to misunderstandings between health and social care staff and among different roles within the social care sector. These misunderstandings, in turn, can cause problems for potential partnership working.

A discharge coordinator at a rehab hospital discusses the challenges of working with social care

We are a short rehab hospital and she's able to go, and if she wants to leave, we can’t stop her… I do find social services sometimes-even back in my day when working in mental health, it was always slightly challenging, and I don't know whether it's just frustration? I think they’re probably frustrated with us- that we wanted things done and they have a way to work in… that is a bit of a challenge at the moment, waiting to get something back from them.
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Some people, including practitioners, also highlighted the importance of trying to cut down on unnecessary moves and preventing problems from developing.

A social worker stresses the need to prevent moves if possible

I think it is good if we then are preventing a move to a whole other different environment… I know for a fact that people need to access care homes and nursing homes because we just haven’t been able to get double up calls and things like that and that's never great. But that sometimes happens. So it’s about having those preventative services as well.
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How to improve move-related practice

We talked to older people, carers and social care practitioners about how to improve the process of moving someone to a care setting. They identified...