Evidence
Alert

People with dementia need more involvement in decisions about their long-term care

People with dementia are often not involved in key conversations about their future care when they are in hospital. NIHR research found that people with dementia often have their views or wishes overlooked, even when they are able to express their opinions clearly.

This group of people can struggle with memory, communication and decision-making, and these problems can get worse during a hospital stay. It can be difficult for hospital staff to share information effectively with the person and their family, and to make collaborative decisions. 

In this study, researchers talked to and observed people living with dementia who had been admitted to hospital for any reason. They also interviewed their families and members of staff. The quality and degree of communication between these groups varied. They often had conflicting ideas about the care needs of the person with dementia.

Several practical ways to better meet the needs and wishes of people with dementia, and their families, were suggested. Better assessments of whether someone can understand information and use it to make a decision (capacity) are essential. Information-sharing needs to be improved, and people with dementia and their families need to be involved early and consistently in decisions about future care arrangements. Staff need more support to put these strategies into practice. 

Such changes could help people with dementia leave hospital earlier – and with care arrangements that are more acceptable to them and their families. 

Further information on dementia is available on the NHS website.

What’s the issue?

One in four people in UK hospitals have dementia. People with the condition often have complex care needs and important decisions about their future care are commonly made in hospitals. These decisions may lead to life-altering events for many people, such as where they will live after they are discharged or how much support they are offered. 

Ideally, people with dementia would be involved in making these important decisions about their lives. But these decisions can be challenging for them. Their ability to make an informed decision depends on the stage or effects of their dementia, their physical health, and the reasons why they were admitted to hospital. Being in unfamiliar surroundings may increase the person’s confusion and reduce their ability to explain and demonstrate their abilities and wishes. 

Little is known about how far people with dementia are involved in making decisions about their care in hospital. Little research has explored decision-making from their perspective. This study explores how the care needs of people with dementia are understood by the individual, by their family, and by hospital staff. It looked at how these perspectives shape decision-making.

What’s new?

This was an in-depth study in two hospital wards. The lead researcher made 400 hours of observations and conducted 46 interviews with 12 people with dementia, 16 family members, and 23 hospital staff (including doctors, nurses, physiotherapists, occupational therapists, and ward clerks). 

Although there were many examples of good practice, people with dementia and their families did not always have their views considered. This led to delays or difficulties in decision-making and discharge arrangements, meaning they spent longer in hospital. 

People with dementia who lacked capacity were most likely to have their perspectives overlooked. But there were also regular failures to involve those able to voice their opinions in decisions about their care. The quality of capacity assessments was variable; and could be made by professionals who had spent no, or very limited, time with the person with dementia. 

The care needs of someone with dementia were often seen differently by staff, family members and by the person themselves. No group had complete knowledge of the person's history, preferences, current situation, and likely future needs. The researchers considered each group in turn. 

    • Staff members’ main focus was to address the person’s physical care needs and risks associated with care plans. They paid less attention to the person’s social and emotional needs, or to their care preferences. Many were not trained to understand the importance of someone’s usual routines, behaviours, and life histories in deciding on care provision. 

A junior doctor asked: “How is it that knowing my patient used to play golf in the sixties will help me manage him, manage his dementia … How is that relevant?”

    • Family members knew about their relatives before their admission but had limited information on their wellbeing in hospital. While some family members were well-informed, others felt excluded from decision-making. They felt their knowledge about their relative’s life history, key relationships and usual behaviours was not valued.

A family member said: “We filled it in [document requesting personal knowledge] but … it didn’t seem as though it was used.”

    • People with dementia were often unsure why they were in hospital, and unaware or unconcerned about risks, such as falling. They sometimes had more confidence in their ability than family and staff. Some were excluded from meetings to spare their distress during frank discussions. But there were also missed opportunities to reach shared agreement. 

From researcher’s notes: “Joan says her daughter told her they are having a meeting this week to decide where she is going to go, as if she may be going into care. I ask if anyone has asked her where she wants to go. She says ‘No.’ She isn’t invited to the meeting.” 

Decision-making was often complex. Even within groups, views were inconsistent. Family members did not always view in the same way their relative’s abilities, or the best future care arrangements. Staff members, with a variety of roles, experience and working hours, had different perceptions of the person with dementia. 

This research found that shared decision-making is possible but does not always happen. Problems typically arose when staff had not involved people with dementia and their families soon after admission. Multiple, skilled conversations were needed where there was disagreement. In effective decision making, the risk to a patient was carefully balanced against their preferences.

Why is this important?

The findings suggest a need for earlier, more regular discussions between staff, people with dementia, and their families. This would ensure that all views on future care needs are taken into account. 

People with dementia and their families should be more involved in decision-making. Particular consideration should be given to involving people with dementia in ways that meet their needs. Staff may need training and support to enable this to happen. 

Ongoing and specific capacity assessments need to be carried out by a professional who knows the person, in consultation with others. Any fluctuations in the person’s ability to make decisions must be taken into account.

What’s next?

This study reveals that information-sharing, decision-making, and capacity assessments could be improved for hospitalised people with dementia. Future research is needed to develop and test approaches that address the complex needs of this group of people.

These findings have already been used to teach student health care professionals, such as nurses and physiotherapists, about the features of good quality care and decision-making for people living with dementia. 

The lead author is continuing to work on improving hospital care for people living with dementia and their families. She is a member of her local NHS Trust’s Dementia Strategy Group. Her role involves planning improvements to hospital care for people living with dementia and their families.

You may be interested to read

This NIHR Alert is based on: Kelley R, and others. Knowledge Exchanges and Decision-Making Within Hospital Dementia Care Triads: An Ethnographic Study. The Gerontologist 2021;61:6

Another paper from the same project, exploring how to involve families of people with dementia in busy hospital settings: Kelley R, and others. The impacts of family involvement on general hospital care experiences for people living with dementia: An ethnographic study. International Journal of Nursing Studies 2019;96:72-81 

Preparing for a hospital stay when a person has dementia: information from the Alzheimer’s Society. 

 

Funding: This research was funded by the NIHR through a Doctoral Research Fellowship. 

Conflicts of Interest: The study authors declare no conflicts of interest.

Disclaimer: NIHR Alerts are not a substitute for professional medical advice. They provide information about research which is funded or supported by the NIHR. Please note that views expressed in NIHR Alerts are those of the author(s) and reviewer(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.

Commentaries

Study author

The variability in communication was unexpected. I was not expecting to see examples where discharge arrangements went so far against what the person wanted or needed. Or to see so many examples of someone able to clearly tell me that meetings were taking place to discuss where they would live after discharge, yet they were not involved in those conversations. 

The way capacity to make a decision was assessed also sometimes surprised me. A lot of assessments took place at one point in time with a staff member who had never met the person. This seemed unlikely to be the best way to find out whether they could make a decision. By contrast, there were also great examples of good care. Some staff really prioritised finding out what was important to the person, or dealt well with disagreements on what should happen. I met some inspiring staff who were passionate about improving care and really highlighted what is possible.

I got to know some of the people with dementia and their families really well. It was hard to see how difficult it was for some people to be in hospital. Sometimes I just spent time with people because that seemed like the right thing to do. Very sadly some people died not long after they were discharged. I expected their families to want to stop taking part at that point, but every family chose to keep telling their story. I am really grateful to everyone who took part and in awe of them for their openness.

Rachael Kelley, Senior Research Fellow, Centre for Dementia Research, School of Health and Community Studies, Leeds Beckett University 

Dementia UK 

This research clearly indicates that there needs to be a greater emphasis placed on health care training on early discharge planning, consistent and timely communication, person-centred care, and joint decision making between family members. There also needs to be better quality capacity assessments in the hospital setting to identify whether the person with dementia and any family carers understand the implications of discharge. These assessments should be done in accordance with the Mental Capacity Act 2005.

The variability in the quality of communication between the patient with dementia, family caregivers and professionals is clearly contributing to a lack of understanding regarding the needs and wishes of the patient. In some cases, this is having a negative impact on hospital stays.

Early discussions regarding what the person with dementia is still able to do, their life history and preferences are key elements to effective future care planning. Decision making should occur ‘jointly’ with all parties present; the person living with dementia, their family care givers, and professionals involved in that care.

Sharing the findings of this study will hopefully raise awareness of the potential opportunities to secure improvements within hospital practice.

Kerry Lyons, Consultant Admiral Nurse, Dementia UK 

Family carer 

I am the carer of a family member with dementia and other comorbidities who has been hospitalised more than once. I have long been concerned as to how the patient’s needs can be understood. 

The overall conclusion that there needs to be better and earlier communication is not a new finding for patients, carers, or professionals. It is frustrating that poor communication has been identified so often as a major risk for patient safety yet continues to be problematic.

Understanding the needs of persons with dementia in a hospital setting is vitally important as their condition makes them doubly vulnerable. This study flags up, among other issues, the need for improved dementia awareness training for hospital staff. It indicates that little attention is being given to the Mental Capacity Act 2005 – particularly the need to communicate in ways appropriate to the individual and actively to take steps to help the individual make decisions themselves. 

It would be interesting to see the results of a similar study carried out in a dementia-friendly hospital.

Janet Ruane, Public Contributor 

Researcher 

I found the discussion of potential power imbalances between the parties useful and enlightening. It could impact health and social care guidelines on hospital discharge for people with dementia. It would be useful to consider and discuss this paper during training sessions for health and social care professionals.

Treena Parsons, Academic researcher