What is important to people with dementia?

    May 21, 2014

    Statements to help assess healthcare on empirical research


    The Health Innovation Network is the Academic Health Science Network (AHSN) for South
    London, collaborating with partners from the NHS, universities, local government, industry,
    the third sector and service users and the public to promote innovation and best practice.
    Improving dementia care is one of the key clinical priorities for the Health Innovation

    The term ‘dementia’ is used to describe a collection of symptoms including loss of memory,
    mood changes, feeling sad, angry or frightened, communication problems and a gradual loss
    of the skills needed to carry out daily activities. These symptoms are caused by structural
    and chemical changes in the brain as a result of physical diseases. Dementia is a
    progressive condition and symptoms become more severe over time. Each person’s
    experience of dementia will vary depending on the type of dementia, their physical make up,
    their emotional resilience and the support available to them. There is not currently a cure for
    dementia although medication can reduce symptoms and slow progression in some people.
    A range of support may improve people’s quality of life.1

    The Health Innovation Network is developing ways to measure the experience of health
    services among people with dementia and their carers. The process of developing the
    metrics is as important as the final outcome so people with dementia, carers, patient and
    carer representative organisations, professionals and other stakeholders are being engaged
    using a Delphi technique to elicit opinions. People will be asked questions and invited to rate
    the importance of various things. Their responses will be summarised and circulated for
    discussion in repeated rounds until consensus is reached. The Health Innovation Network
    wanted to ensure that the statements used in the Delphi process were based on research
    evidence so this document presents statements about what matters to people with
    dementia and their carers
    that could be used as part of quality measurement standards or
    indicators. The statements are drawn from empirical literature, specific to dementia.

    Much work has been done about what matters to patients generally.2 There are a number of
    frameworks for considering important aspects. For instance, building on the six-item US
    Institute of Medicine framework for person-centred care,3 the Picker Institute framework includes eight domains: respect for patient-centred values, preferences and expressed needs; coordination and integration of care; information, communication and education; physical comfort; emotional support; involvement of family and friends; transition and continuity; and access to care.4 A meta-synthesis of different frameworks and proposed sets of domains of patient-centred care found that most contained similar concepts.5 The Kings Fund reviewed literature about ‘what matters’ to patients and undertook case studies and analyses of survey data.6 There have also been many thousands of studies published about improving patient experience7,8 and measuring patient experience.9,10,11 This document differs in that it draws on empirical evidence about dementia care to cross-check whether the things that people with dementia and their carers say are important to them match with more general characterisations about what is important for person-centred care.

    Compelling Evidence

    To compile a list of statements that could be used to test what matters most to patients, an
    independent team examined all documents compiled by the Health Innovation Network as a
    starting point to draw out important topic areas. Most of this material was not empirical
    literature relating to people’s experiences of dementia care or what people and families
    wanted from dementia care. The material was largely descriptive, such as examples of small
    improvement projects, opinion pieces, editorials or material that did not relate to

    After reviewing background materials, general frameworks about what is important in patient
    experience were examined followed by a search for empirical research specifically about
    patient experience in dementia.

    Three bibliographic databases were searched for research published up until April 2014.
    Studies were eligible for inclusion if they focused on the experiences of people with
    dementia or their carers. This included studies asking people what was important to them as
    well as studies asking people to reflect on the quality of care received. Search terms
    included dementia, experience, carers, person-centred and Alzheimer’s disease. There were
    no geographic or temporal restrictions.

    In total, 2,971 studies were screened. From these, 162 relevant studies were identified and
    the full text reviewed. All of this material was drawn together into a list of statements
    reflecting key themes in what is important to people with dementia in terms of health and
    social care. The review was not focused on describing the findings of individual studies, but
    rather of creating a checklist of statements that people with dementia might make when
    commenting on the quality of services.

    Quality statements

    The result of the review was a list of statements that people with dementia and their carers have made when assessing the quality of healthcare. The statements focus on:

    1. What care is provided
    2. How care is provided
    3. And how people feel as a result of the care provided

    The statements can be divided into six domains:

    • learning about dementia
    • using services
    • dignity and empathy
    • involvement
    • ongoing support
    • and support to maintain some independence

    The quality statements are listed in Box 1. Citations are provided by each statement to illustrate the empirical evidence base from which they have been adapted. Only empirical evidence is listed in the citations, though there are many other supporting documents such as the National Dementia Strategy and NICE quality standards.12,13,14,15

    The statements are all worded positively, to highlight aspects that people with dementia and their carers think are important. However, in studies themselves, the concepts were equally likely to have been expressed as negative statements such as ‘I have not been given enough information’ or ‘there is a lack of partnership working.’ The statements should not be taken as verbatim comments or reflections of how people see current levels of care, but rather an extraction of what people would like to see or thought was important.

    It is acknowledged that people with dementia may not always be able to respond to questions about their experience of care, especially in the later stages. It is also true that the statements in Box 1 are not necessarily worded in the most appropriate manner for speaking with someone with dementia or their carers. The quality statements are not meant to be used as presented without modification, but rather are a way of summarising the types of comments people have made in the empirical literature about what is important to them.

    Box 1: Statements made by people with dementia and their carers in the empirical literature about the quality of health services

    Topic 1: What care is provided

    1.1. Learning about dementia

    • My family and I were told I had dementia in a sensitive way.16,17,18,19
    • It was quick to be diagnosed with dementia.20,21,22,23,24,25,26,27,28,29,30,31,32,33
    • Professionals have been open with me about my dementia and my care.34,35,36
    • I have been given clear information about dementia.37,38,39,40
    • Professionals use language that is easy to understand.41
    • I have been given enough information about dementia.42,43,44,45,46,47
    • I have been given enough information to plan for the future.48,49,50
    • I have been given a chance to ask questions.51
    • I have been told about the risks and benefits of treatment in a way I can understand.52
    • I have had an opportunity to meet other people with dementia and their families.53,54,55,56

    1.2. Using services

    • I get the treatment and support that is best for me and my life.57,58,59
    • I can easily get services when I need to.60,61
    • I do not have to wait too long when I need care.62
    • I get a check-up regularly without asking for it.63
    • I have enough help from health and social services.64
    • My family or other important people have enough help from health and social services.65, 66,67,68,69,70,71,72,73,74,75,76,77,78,79,80,81,82,83
    • I only go to hospital when I really need to.84
    • I have all the equipment, furniture and privacy I need to be comfortable.85,86,87,88,89,90,91
    • Health services tell me about other services in the community that could help me or my family.92,93,94,95

    Topic 2: How care is provided

    2.1 Dignity and empathy

    • I am treated as a person, not a number.96,97,98,99,100
    • Health and social services are designed around my needs.101,102,103,104
    • Services take account of my age, ethnicity, religion, sexuality and other things that are important to me.105,106,107,108,109,110,111
    • Services treat me with dignity and respect.112,113,114,115,116
    • Staff try to put themselves in my shoes and understand what things are like for me.117,118
    • Professionals are usually friendly and kind.119,120,121,122
    • I feel supported and understood.123,124,125,126

    2.2 Involvement

    • I feel listened to by professionals.127,128,129,130
    • I can be involved in decisions about my care if I want to.131,132,133,134,135
    • My care is a partnership between me, my family and professionals.136,137,138,139
    • My family or other important people have been involved as much as I would like.140,141,142,143,144,145
    • I know what I can do to help look after myself.146,147
    • My family and I have been involved in planning what will happen in later life.148,149,150,151,152,153,154,155,156

    2.3 Ongoing support

    • I trust the health and social services teams that support me.157
    • There is good continuity in the care I receive over time.158,159,160
    • There are good links between services so one service knows what another is doing.161,162
    • There are smooth transitions between services.163

    Topic 3: How people feel as a result of care

    3.1 Support to maintain some independence

    • We are supported so I don’t feel like a burden to my family.164,165,166,167,168,169,170,171,172,173,174,175,176
    • I am supported so I don’t feel lonely.177,178,179,180
    • I am supported so I feel part of a community.181,182,183,184,185,186,187,188,189,190
    • I am supported to keep my identity and continue activities I enjoy.191,192,193,194,195,196,197,198,199,200,201
    • I am supported so I don’t usually feel depressed or anxious.202,203,204,205,206,207,208,209,210
    • I have practical support with things like nutrition, sleep and hygiene.211,212,213,214,215,216,217,218
    • My family have been helped with grief and coping. 219,220,221,222,223,224,225,226,227,228,229,230,231,232, 233,234,235,236,237,238,239,240,241,242,243,244,245,246,247,248,249,250,251,252

    Things to bear in mind

    The quality statements in Box 1 include both functional aspects of the quality of care (what is
    provided) and relational aspects (how people experience care). There are likely to be too
    many statements to act as quality indicators because research suggests that people prefer
    short and simple statements when rating the quality of care. The purpose of this review of
    empirical literature was to amass a wide range of statements, and these will be further
    refined and prioritised via the Delphi process.

    It is important to note that much of the research from which these statements are drawn
    relates to the caregivers of people with dementia rather than statements made by people
    with dementia themselves. Furthermore, the majority of research is based on qualitative
    interviews with small samples of people. Despite these caveats, the compilation does
    provide an empirically-based starting point to begin testing the most important domains to

    The statements broadly map to the Picker Institute framework of person-centred care, but
    there are some differences specific to dementia care. Table 1 illustrates how the literature
    about what is important to people with dementia maps to the eight domains in the Picker
    Institute framework.

    Domains identified in researchDomains in the Picker Institute framework
    1.1 – Learning about dementiaCommunication and education
    1.2 – Using servicesAccess to care
    Physical comfort
    2.1 – Dignity and empathyRespect for patient-centred values,
    preferences and expressed needs
    Emotional support
    2.2 – InvolvementInvolvement of family and friends
    2.3 – Ongoing supportCoordination and integration of care
    Transition and continuity
    3.1 – Support to maintain some

    Table 1: Mapping statements from people with dementia onto the Picker Institute framework

    The empirical evidence provides few examples of people with dementia and their families
    focusing on physical comfort (such as food and noise) or integration. Statements about
    involvement, dignity and empathy are more common. This is not to suggest that some
    aspects are more important to people with dementia than others. Such comments could only
    be made following empirical testing. Rather, this observation is made to highlight that there
    are some differences in the priorities expressed in published studies about dementia
    compared to generic frameworks about patient experience. Whilst the broad principles
    may be similar, the extent of prioritisation may differ. An example is statements about
    maintaining independence. Dementia research sometimes prioritises services that help to
    reduce isolation, loneliness and carer burden, whereas these concepts are not always
    included in more generic frameworks about person-centred experience.

    In the US, a ‘Person-Centred Dementia Care Framework’ has been developed based on a
    literature review about dementia care and input from a wide range of experts.253 The
    framework contains four levels as illustrated in Figure 1:

    • The person living with dementia and their family is at the centre of care. The innermost ring signifies the network of people who care about the person.
    • The next level focuses on the core values and philosophy underpinning personcentred care and this is linked to the domain of relationships and community.
    • The next level focuses on structural domains deemed to be important for personcentred dementia care. These include a meaningful life, accountability, governance, leadership, workforce, services and the environment.
    • Radiating from these domains are specific operational and individualised practices to support person-centred care.

    The ‘quality statements’ identified from the current review for the Health Innovation Network span the four levels of this framework, though there is most emphasis on the core values (dignity, involvement, independence) and on the way these are operationalised in services rather than the structural elements. As with the mapping onto the Picker Institute framework, this again reinforces that empirical research with people with dementia and their carers has emphasised relational aspects of care rather than environmental or functional issues.

    Figure 1: Person-centred dementia care framework developed in the US254

    The next phase of the Health Innovation Network’s project is to test the quality statements
    with people with dementia, their carers and stakeholder organisations in order to narrow
    down the list into those most useful and appropriate for measuring the quality of dementia