Involving people living with dementia in decisions about care

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Dementia: Assessment, management and support for people living with dementia and their carers. London: National Institute for Health and Care Excellence (NICE); 2018 Jun. (NICE Guideline, No. 97.)

Dementia: Assessment, management and support for people living with dementia and their carers.

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6Involving people living with dementia in decisions about care

When faced with a progressive medical condition most people will be interested in how that condition will be managed in the future. To be successful, advanced care planning must have the person and their wishes at its centre. Professionals may face challenges as they offer support and guidance throughout this process.

Each person’s situation is unique, and therefore some people living with dementia will want as much practical support and information as is available in their location; others may deny they have problems and reject help; and again others may prefer to defer all decisions to the authority of the health or social care professional. Professionals will also need to adapt their approach when supporting and communicating as the dementia progresses, and this can become increasingly problematic if a person’s mental capacity fluctuates. Many people living with dementia and their carers or families would prefer the health or social care professional to initiate the conversation about advance planning and discuss how to get access to advice.

Providing good quality, timely information for the person living with dementia can help increase their involvement in key decisions and help them to have a share in the decision making process. We should not assume that a person living with dementia will lack mental capacity, and even if a person living with dementia does lack the mental capacity to make a certain decision, this does not mean that they will lack it with regards to other decisions they face. The Mental Capacity Act 2005 Code of Practice provides clear instruction as to how people without the capacity can be supported to make a decision or when others have to make decisions for the person, such as during a best interest meeting.

Each person’s family dynamic is unique. During discussions about advanced care planning various family members, and especially the primary carer, can feel conflicted; attempting to balance the needs of the person they are caring for, their own needs, and those of the rest of the family. At times families can become divided as to the best way forward, which can lead to disagreements, or there may be specific cultural needs which for each member of the family carry their own set of values and considerations. With all this in mind, professionals will need to ensure they are working to maintain the person living with dementia’s own social network, as well as provide support that helps to maintain family cohesion.

Each organisation will have its own set of policies and protocols and there are a number of legal requirements that professionals must adhere to. We must ensure that these regulations are used to work for the person living with dementia, not against them. This will often require working closely with other agencies in partnership to ensure the person living with dementia, their families and carers receive high quality support.

6.1. Barriers and facilitators to involvement in decision making for people living with dementia

Review questions

What barriers and facilitators have an impact on involving people living with dementia in decisions about their present and future care?
What barriers and facilitators have an impact on how people living with dementia can make use of advance planning?

6.1.1. Introduction

Table 26

Review summary: Barriers and facilitators to accessing care.

Qualitative studies and qualitative evidence syntheses were included if they explored the barriers and facilitators to involving people living with dementia in decisions about their present and future care, and making use of advance planning. Studies needed to contain participants from the UK, report the views of either people living with dementia or their carers, and match the criteria given in Table 26. For full details of the review protocol, see Appendix C.

. Papers were excluded if they:

did not report the views people living with dementia or their carers in the UK
included only quantitative analysis of the collected information
were not in English language
were abstracts, conference proceedings and other unpublished studies.

6.1.2. Evidence review

A single search was conducted for all the qualitative questions included in this guideline, which returned a total of 10,085 references. References were screened based on their titles and abstracts, and the full texts of 61 references that were potentially relevant to these review questions were requested. Ten qualitative studies exploring the barriers and facilitators to involving people living with dementia in decisions about their care were included in the review. The included studies are summarised in Table 27. The 51 excluded papers, with reasons for exclusion, are presented in Appendix F.

6.1.2.1. Description of included studies

A summary of the included primary studies for this review question is given in Table 27. In addition, one systematic review of qualitative studies exploring barriers and facilitators for carers making decisions for people with dementia (Lord 2011) was also included. For the full evidence tables and full CERQual profiles please see Appendix E and Appendix G. References for the included studies are given in appendix I.

Table 27

Summary of included primary studies.

6.1.3. Health economic evidence

As this review question was qualitative in nature, it was not appropriate to conduct a search for economic literature.

6.1.4. Evidence statements

6.1.4.1. Barriers to decision making

The following barriers were identified to involving people living with dementia in decision about their current and future care:

Individuals denying they have problems – a barrier to advance planning on the part of the people with dementia and carers was difficulty for some people with dementia or carers to accept the diagnosis (high confidence)
Individuals rejecting help - people will often reject help, either because they feel they do not need it or because accepting help would involve psychologically acknowledging the severity of their problems (high confidence)
Individuals having a deference towards the authority of healthcare professionals - knowing that they had dementia affected confidence in expressing opinions, self-esteem and whether they thought their views were worth listening to (very low confidence)
Individuals having a poor relationship with their formal or informal carers (very low confidence)
Healthcare professional not recognising the problems people have and their need for support - healthcare professionals may not recognise people need additional assistance to be involved in decision-making particularly when people are not open about difficulties they are having (high confidence)
Late diagnoses of dementia - if the diagnosis of dementia is delayed, this can make it difficult for all the necessary advance discussions to be had before capacity issues start to occur (high confidence)
Lack of quality information given in a timely fashion, and available whenever best suits the individual (high confidence)
Confidentiality issues preventing carers having the information they feel they need to support decision-making (high confidence)
Staff sticking to protocols and policies, rather than having individualised discussions (high confidence)
Carers feeling conflict between the different roles they have to fulfil (high confidence)
Friend carers felt less able to support decision-making than family carers (low confidence)
Carer guilt about decisions made - feelings of anguish and guilt over decisions made. Journey towards a decision was directed by a mixture of fatigue and a lack of obvious or available alternatives. Feelings of guilt and failure were particularly strong for people obliged to cope alone (high confidence)
Conflict within families - when the person living with dementia was involved in decision-making, they usually expressed reluctance to move to a care home. This often led the carer either to delay the decision or exclude the person living with dementia from decision-making (high confidence)
Rigidity of healthcare system, and difficulty in changing decisions made - people felt that once a decision was reached, it was then difficult to change this decision if circumstances changed, and this led to a reluctance to make initial decisions (high confidence)
An inability to plan due to unpredictability of condition and waiting lists for interventions – people struggle with knowing when to seek care home placement due to dementia being unpredictable and wait lists of institutions. Some patients find discussing the future difficult without knowing what the future will bring (high confidence)
Often there was one partner more dominant in decision-making. (low confidence)
Fear of stigma prevented carers and people living with dementia from seeking help. (low confidence)
Becoming the main decision-maker for some carers was wearisome and felt like a burden (medium confidence)
Limited knowledge of the legal system to support decision-making when capacity was lost, including advance care planning and Lasting Powers of Attorney (low confidence)

6.1.4.2. Facilitators for decision making

The following facilitators were identified to involving people living with dementia in decision about their current and future care:

Reconceptualisation and adjustment to altered circumstances, and presentation of decision-making as trying to maximise independence - allowing services to develop slowly (high confidence)
Practical support and information provided by healthcare professionals - suggesting interventions to facilitate agreement, or structured approaches to decision making. Collaboration with staff helped carers with decision-making, and this was facilitated by a trusted healthcare professional who consulted them and advocated effectively (high confidence)
Healthcare professionals initiating conversation about advance planning - people felt that clinician’s raising these discussions helped them with decision-making (high confidence)
Access to legal and financial advice (high confidence)
Structured decision support and discussion tools - open-ended, structured tools may be useful to guide discussions around advance planning. Staff who had not yet conducted any advance care planning discussions themselves were unsure how to initiate the discussion with those people with dementia who had not raised the issue themselves, but saw the tool as a potential way of facilitating this (low confidence)
Carers accompanying patients on visits to healthcare professionals (high confidence)
Shared decision-making approaches - carers found it helpful to hear the perspectives of other members of the family or professionals when making decision on behalf of the person living with dementia – they felt it “gave permission” to make decisions (high confidence)
Family cohesion and support (high confidence)
Social support networks - extended family, voluntary and community networks (high confidence)
Alternative communication strategies - discussing care was facilitated by using Talking Mats. Talking Mats helped the participants living with dementia to be aware of what their family members were doing for them, and were seen an enjoyable activity which improved communication between the person living with dementia and his/her family (low confidence)

6.1.4.3. Issues identified in Huntington’s disease

The following facilitators were identified in a study specifically in people with Huntington’s disease

Importance of information provision - easy-to-follow, consistent verbal and written information was desired, which should be Huntington’s disease specific (low confidence)
Importance of therapeutic relationship between individual and an expert in Huntington’s disease - an established therapeutic relationship with an expert in Huntington’s disease. Personal qualities such as being approachable, caring and sensitive with good communication skills were felt to be important (low confidence)
Early introduction to advance decisions - opinions of patients with Huntington’s disease were different to professionals. Professionals were reluctant to approach service users too early, particularly asymptomatic individuals with the altered Huntington’s disease gene, for fear of causing distress (low confidence)
Importance of advance decision forms (low confidence)
Importance of discussions on power of attorney (low confidence)

6.1.4.4. Health economic evidence

As this review question was qualitative in nature, it was not appropriate to conduct a search for economic literature.

6.1.5. Evidence to recommendations

Relative value of different outcomes	The committee agreed that it was useful to have evidence of both barriers and facilitators to decision making for people living with dementia. However, evidence involving facilitators was of greater value because it translated more easily to recommendations, whilst where a barrier was identified without an accompanying facilitator, it was not always easy to think of a practical solution to overcome that barrier.
Trade-off between benefits and harms	The committee noted that the evidence demonstrated that most people living with dementia expressed a clear preference for being offered information early, usually soon after diagnosis. However where people living with dementia or their carers did not want to receive the information soon after diagnosis the committee agreed that the person’s wishes should be respected but it is important that the information is offered on an ongoing basis or when requested by the person. The committee also noted that people diagnosed with dementia may need more than 1 appointment to be able to process and understand the information. Therefore a recommendation was made that people living with dementia be offered information and opportunities for discussion on an ongoing basis. The committee agreed with the finding in the evidence that some people, following a diagnosis, may not initially want follow-up appointments or referral to other services, but that these people may change their minds later. Therefore, the committee agreed that professionals should consider providing these people the opportunity to be contacted at a specified future time, when they decide they do want to access more information and support. If this is not available, there is a risk that people may live without appropriate support for a considerable period of time before things become sufficiently bad that services once again become involved. The committee agreed with the finding in the evidence that that how some professionals currently interpret patient confidentiality guidance may have the unintended consequence of reducing standards of care. If appropriate information is not shared with informal carers this can make it difficult for carers to provide the necessary support for people living with dementia. Therefore, the committee recommended that when dementia is diagnosed, the person’s consent should be sought for information sharing with their carers and/or family members. The reason that this conversation should happen at diagnosis is because the person living with dementia is more likely at that time to have capacity to decide who they would like their information to be shared with. The committee noted that if consent for information sharing has been obtained, this information should be recorded in the person’s records. This should help to enable carers and/or family members to provide a better standard of appropriate care. The committee agreed that the data protection training offered to staff who work with people who have dementia should specifically cover the benefits of sharing information where permission has been given. Sharing information enables other health and social care professionals to step in and work effectively with the person. The committee agreed with the finding in the evidence that advocacy and voluntary support services are important for people living with dementia and the committee agreed that the advocacy and voluntary support service recommendations from the previous guideline should be retained (informing people about the services that are available). However the evidence presented identified that people living with dementia and their carers benefit from access to financial and legal services and these services were added to the list of services to inform people about. The committee agreed it was important to discuss both advance statements and advance directives with people living with dementia for as long as they have the ability to be involved in decision making. It was noted that some people living with dementia feel discouraged from making advance decisions because they are concerned they would not be able to change these decisions in the future. Therefore, it was agreed that a recommendation be made that people living with dementia are offered regular opportunities to make changes to their advance statements and advance directives. To further support this, the committee noted that people living with dementia should be advised upfront that they will be able to change their advance statements and advance directives in the future, to ensure that fears that advanced statements and advanced directives cannot be changed do not act as a barrier to advance planning. The committee agreed that advance planning forms should be standardised as far as possible, to maximise their level of transferability. This is to ensure that the wishes of the person living with dementia can be understood by everyone who needs to read them. Whilst it was noted that it was not possible to ensure national standardisation, it was agreed that at a local level this should be a more achievable goal. The recommendation made by the committee on this subject is reported in section 7.1.6 on coordinating care for people living with dementia. The committee agreed that training staff in managing difficult and emotional conversations should enable them to have the confidence to initiate and support discussions on advance planning. The evidence presented to the committee suggests that many people living with dementia and their carers would prefer staff to initiate such conversations. However, the evidence also demonstrates that it is common for staff to lack confidence in their ability to discuss advance planning because staff feel that advance planning involves difficult and emotional conversations. The committee noted this training would also be important for people involved in the diagnosis of dementia, as this was another time where emotionally challenging conversations would take place. The evidence suggests that people living with dementia can have a lack of confidence in the value of their own opinions. This is a significant barrier for people with dementia to make decisions about their care, as healthcare professionals may not be able to recognise the problems people have and their need for support. Therefore, the committee agreed that it was important that carers and staff were aware of possible low self-esteem or confidence in people living with dementia so they can try to overcome this barrier. The committee agreed that people living with dementia should be encouraged and enabled to give their own views and opinions. The word ‘enable’ was included in the recommendations because it is proactive. The evidence presented further suggests that alternative communications strategies (such as pictorial communication tools) are a facilitator to involving people living with dementia in decision making. Therefore, the committee recommended that their use should be considered by carers and healthcare professionals.
Consideration of health benefits and resource use	The committee agreed that for the majority of the recommendations made, any changes in resource use were likely to come from potentially needing more time to complete appointments. However, because the recommendations provide advice on potential approaches rather than prescribe specific actions, the committee agreed they were not likely to lead to a significant increase in resource use. The only recommendations the committee agreed would have a specific cost attached to them were the 2 recommendations made around staff training. However, the committee were confident that the costs are justified by the long-term benefits of better-trained staff.
Quality of evidence	The committee agreed that overall the evidence was of good quality and the issues identified agreed with their practical experience. It was, however, noted that the reliance on qualitative evidence meant it was not possible to offer prescriptive recommendations in many areas, but rather more general guidance. For the purposes of developing dementia guidelines, the study in Huntington’s disease was agreed to be of lower value. This is because some people in the study had the Huntington’s disease gene and had not yet developed symptoms at the time the research was conducted. Nevertheless, it was agreed this study was still valuable because it provided a different perspective; that of a younger population.
Other considerations	The committee noted that there are many subgroups of people living with dementia who may have very different information needs (e.g. younger people, those with comorbidities, people with rarer dementia subtypes). They agreed it was important that the information provided be tailored to these different circumstances, rather than only general information about dementia being provided. The committee also agreed it was appropriate to cross-refer in this section to both the NHS Accessible Information Standard (which it is a requirement for people to follow) and the NICE guidelines on patient experience in adult NHS services and people’s experience in adult social care services, which provides more advice on providing appropriate information, and making that information accessible. Sections of recommendations referring to people in or looking for work were also informed by the evidence review on the specific needs of younger people living with dementia (section 17). The committee noted that there was considerable interest from many people living with dementia in being involved in research, but people were often unaware of opportunities to do so. The committee therefore agreed it was appropriate to make a recommendation that people living with dementia be informed about opportunities to participate in research.

6.1.6. Recommendations

Information provision

33.

Provide people living with dementia and their family members or carers (as appropriate) with information that is relevant to their circumstances and the stage of their condition.

34.

Be aware of the obligation to provide accessible information as detailed in the NHS Accessible Information Standard. For more guidance on providing information and discussing people’s preferences with them, see the NICE guideline on patient experience in adult NHS services and people’s experience in adult social care services.

35.

At diagnosis, offer the person and their family members or carers (as appropriate) oral and written information that explains:

what their dementia subtype is and the changes to expect as the condition progresses
which healthcare professionals and social care teams will be involved in their care and how to contact them
if appropriate, how dementia affects driving, and that they need to tell the Driver and Vehicle Licensing Agency (DVLA) and their car insurer about their dementia diagnosis
their legal rights and responsibilities
their right to reasonable adjustments (in line with the Equality Act 2010) if they are working or looking for work
how the following groups can help and how to contact them:
- local support groups, online forums and national charities
- financial and legal advice services
- advocacy services.

36.

If it has not been documented earlier, ask the person at diagnosis:

for their consent for services to share information
which people they would like services to share information with (for example family members or carers)
what information they would like services to share.

Document these decisions in the person’s records.

37.

After diagnosis, direct people and their family members or carers (as appropriate) to relevant services for information and support (see recommendations 47 and 48 on care coordination).

38.

For people who do not want follow-up appointments and who are not using other services, ask if they would like to be contacted again at a specified future date.

39.

Ensure that people living with dementia and their carers know how to get more information and who from if their needs change.

40.

Tell people living with dementia (at all stages of the condition) about research studies they could participate in.

Advance care planning

41.

Offer early and ongoing opportunities for people living with dementia and people involved in their care (see recommendation 36) to discuss:

the benefits of planning ahead
lasting power of attorney (for health and welfare decisions and property and financial affairs decisions)
an advance statement about their wishes, preferences, beliefs and values regarding their future care
advance decisions to refuse treatment
their preferences for place of care and place of death.

Explain that they will be given chances to review and change any advance statements and decisions they have made.

42.

At each care review, offer people the chance to review and change any advance statements and decisions they have made.

Involving people in decision-making

43.: Encourage and enable people living with dementia to give their own views and opinions about their care.
44.: If needed, use additional or modified ways of communicating (for example visual aids or simplified text).

Staff training

45.

Ensure that all health and social care staff are aware of:

The extent of their responsibility to protect confidentiality under data protection legislation and
any rights that family members, carers and others have to information about the person’s care (see recommendation 48 on information sharing between different care settings).

46.

Health and social care professionals advising people living with dementia (including professionals involved in diagnosis) should be trained in starting and holding difficult and emotionally challenging conversations.

Bookshelf ID: NBK536494

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