Personal care and dementia – the research

What is ‘Crossing the Line’?

In 2022-2024 the Association for Dementia Studies, University of Worcester, led a research study called Crossing the Line. The aim of the study was to gain a deep understanding of the experiences of family carers relating to their provision of personal care to people living with dementia within the UK.

The study commenced with a UK-wide survey of family carers about the challenges they face and what they think could help carers cope with their caring activity. Nearly 300 people who had direct experience of providing personal care for family living with dementia responded to the survey.

The survey was followed by in-depth interviews with around 30 carers to explore the main points raised in much more detail. Following this, three co-production events with experts by experience and professionals were undertaken which helped to translate the study findings into resources that could be used to benefit carers in the future. The resources found on this website are the result of this co-production.

The Crossing the Line study aimed to have a co-production ethos from the beginning. Its work was guided by an Expert Advisory Group comprising of individuals and organisations with a wealth of experience in providing advice and support to people affected by dementia. Project partners included Dementia UK, Alzheimer’s Society, Dementia Carers Count, TiDE, Home Instead, Dougie Mac Hospice, Betsi Cadwaladr University Health Board and Midland Partnership NHS Foundation Trust. Public and Patient Involvement had a strong focus on learning from the current and past experiences of family carers caring for people living with dementia.

We have worked to ensure that the guidance found on this website is useful in real-life situations, by including strategies, ideas and links to further information that have helped people when supporting someone with personal and intimate care activities. We know that different strategies and forms of help are appropriate for different people and families and it’s not a one size fits all. The information provided here is a guide to be used in a way that suits you best.

The contents on this website have been reviewed by a wide range of family carers and professionals across England, Wales, Northern Ireland, and Scotland.

What is ‘personal care’ in dementia?

‘Personal care’ can mean different things to different people, and covers quite a wide range of activities that a person with dementia might need help with, including activities that may be described as ‘intimate care’. When we talk about personal care, often we think of the most intimate kinds of care such as helping someone to wash, bathe or shower, or to go to the toilet, but it can also cover helping someone to take care of their personal appearance, get dressed and undressed, look after their hair, skin and nails, and help with eating and drinking.

It’s important to recognise that some of these activities may be easier to undertake for some family carers than others: some may be straight forward and pleasant to help with, but others may feel demanding and overwhelming, both physically and emotionally. There may be some that carers feel would be ‘crossing a line’ with the person they are supporting, or that people feel they are simply not able to do for their own individual reasons.

People undertaking a caring role often benefit from discussing this with health and care professionals, so that they feel supported in making decisions regarding what they can and can’t manage. Often people may feel out of their depth with providing personal and intimate care and may find it a difficult subject to talk about. Professionals can help by acknowledging the physical and emotional strain this may have on an individual, and providing the opportunity for people to talk open and honestly, without judgment.

What do we mean by ‘carers’?

When we talk about someone as a ‘carer’, we mean that they are providing some form of regular, ongoing support to help a person with dementia in their daily lives. Sometimes you will hear people in this role being referred to as a ‘family carer’ (e.g. if that person is a caring for a parent or a spouse), or an ‘informal’ or ‘unpaid’ carer (to distinguish them from paid carers employed by health and care services). In our Crossing the Line UK survey of about 300 people in a caring role, we found about half were adult children of the person they cared for, while about a third were a spouse – and more than 80% of carers were female. There was an even split of whether people acting as carers lived with the person they cared for or were travelling to provide care but, either way, two thirds of them provided daily personal care.

Families come in all shapes and sizes. Some people may have developed a ‘chosen family’ where people are not related biologically or legally but rather depend on each other in the way that a family might. Being a carer is not the same as being someone’s next of kin. Someone’s next of kin is their closest living relative, unless the person specifically states otherwise. Many people do not think of themselves as a ‘carer’ and simply see themselves as helping and supporting someone close to them, such as a friend or family member. However, it is sometimes important that people identify themselves as a ‘carer’ in the eyes of health and social care authorities to get the right support. People may also be asked by health and social care professionals if you are a person’s ‘main carer’. In some cases, it may be clear who the ‘main’ person is proving support but, in others, care tasks may be divided between multiple family members and friends.

The resources on this website are aimed at anyone who is assuming the role of a ‘carer’ in an unpaid capacity.

What are the main challenges in providing personal care to family and friends living with dementia?

Helping someone with personal care can be very demanding on a carer’s time and energy, on their finances, and on their emotions. This is true whether the carer and the person they support live together or separately. It can be very difficult to juggle care with other responsibilities such as working, looking after children, and maintaining a social life and hobbies. Family carers can find it hard to find time for themselves, but it is essential that they look after their own wellbeing or they may find that they struggle to look after the person they support. Breaks from their caring role are essential, as are ways for them to look after their own physical and mental health needs, whether that involves seeking formal help or finding ways to do things for the sake of their own wellbeing.

The emotional impact of providing personal care can be big, and hard to manage. The nature of the family carers relationship with the person they support can make this easier or more complicated. It’s common for carers to experience complicated, sometimes overwhelming feelings about their caring role, that may include feelings of love and obligation, loneliness and grief, resentment, frustration and anger, guilt at feeling such things or guilt at not being able to physically and/or mentally do more. It is also common, however, for carers to experience pride and satisfaction in being able to support someone they care for, and to even feel closer to the person they support as a result of caring for them.

Someone who is in a caring role needs support too. Family dynamics can be challenging and sometimes strained, as it’s common that not everyone will agree how a family member with dementia should be cared for and by whom. If family members can work together, support each other and share caring responsibilities, they may find that it will make for a more positive experience for all. People in a caring role can experience feelings of stigma and shame around providing personal care, but talking about it, whether with friends or a member of their chosen family or a health care professional, can help to get practical and emotional tips. Some financial support is also often available. On this website we have drawn together as much information as we can regarding where and how to get help.  

One of the most common challenges carers report is that they simply feel unprepared to take on a caring role, and do not know where or how to find information. Even if a family carer already has knowledge about dementia or helping someone with personal care, this may still not prepare them for the reality of becoming a carer for someone close to them. To add to this, people living with dementia can sometimes be reluctant to accept help or care, which could be to do with their understanding, physical comfort, or desire for independence and dignity. It’s important to support people to continue practicing their lifelong routines, personal preferences and beliefs, as this is not just respectful to the person, but can help you to carry out care tasks in a more person-centred way.

This website is designed to help prepare carers for helping someone with personal care. You will find tips on how to approach personal care to make it a better experience for all.

Film clips sharing carers’ experiences are used throughout the website, but you may also find it useful to see a full presentation from one carer about their experiences. Please note that anything mentioned in the film is based on what worked for this carer and should not be seen as an endorsement or recommendation. Some products and suggestions may not be suitable for other carers and people with dementia depending on their individual situations. If you are unsure, please consult a medical professional.

Acknowledgements

The Crossing the Line project was funded by the National Institute for Health and Care Research (NIHR) under its Research for Patient Benefit (RfPB) Programme (Grant Reference Number NIHR202970)​

The study was reviewed and given Health Research Authority and Health and Care Research Wales approval by the Liverpool Central Research Ethics Committee, reference 23/NW/0098.

The production of the content of this website was led by the Association for Dementia Studies, University of Worcester.

The views expressed on this website are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.

Thanks for the creation and review of the resources go in particular to: