Scales to measure core outcomes for the quality of dementia care in home or residential aged care facilities: a rapid review

Abstract

Background

The Core Outcome Measures for Improving Dementia Care (COM-IC) project aims to develop a core outcome set for measuring the quality of care provided to people living with dementia in routine care settings. In a previous stage of the project, 17 core outcomes were identified. This study is the next step, aiming to review the literature to identify existing or recommended, validated scales for measuring the identified core outcomes.

Design

A rapid review

Data sources

Six electronic databases (PubMed, Embase (Elsevier), CINAHL Complete (EBSCOhost), APA PsycINFO (EBSCOhost), Web of Science (Clarivate) and Scopus (Elsevier) were searched. Searches were completed on 12 July 2024.

Eligibility criteria

Peer-reviewed systematic reviews or original validation studies of scales measuring dignity; engagement in advance care planning; pain; quality of life; feeling safe and secure; emotional well-being; diagnosis of dementia; behavioural and psychological symptoms of dementia; the importance of relationships; meaningful activities; hygiene and comfort; resource utilisation and safety incidents for people living with dementia were included. Peer-reviewed systematic reviews or original validation studies of the scales to measure informal carers’ quality of life, their educational opportunities, formal carers’ morale and dementia-specific qualifications were also included. All studies were required to have been conducted among people living with dementia or carers, as appropriate, and to have full texts available in English.

Data extraction and synthesis

Data on the scale’s name, the number of subscales, subscales’ names, the number of items, response options, scoring, estimated time to complete the scale, recommended frequency of data collection and the setting where the scale was first validated were extracted. Findings are presented in figures, tables and narrative texts.

Results

A total of 88 validated scales were identified. No scales measuring dignity, engagement in advance care planning, feeling safe and secure, hygiene or safety incidents were validated for people living with dementia. No scale was identified to measure the importance of relationships for people living with dementia, the formal carers’ dementia-specific qualifications or the educational opportunities for informal carers. The review also describes the 50 recommended or validated scales.

Conclusions

Several validated or recommended scales exist to measure core outcomes identified as important for assessing the quality of care provided to people living with dementia in routine care settings. This review offers COM-IC stakeholders and other potential users with information on the validated/recommended scales to measure these core outcomes.

Strengths and limitations of this study.

• The rapid review included comprehensive systematic searches for each of the 17 identified core outcomes in six electronic databases.

• Apart from identifying the scales, the review also included a brief description of 50 scales.

• A single researcher performed study screening and data extraction.

• Only systematic reviews, original developments and/or validations of the scales were included in the review.

• The quality assessment of the included studies and systematic review of the psychometric properties of the identified scales not performed.

Background

Dementia is a syndrome caused by a group of progressive degenerative brain conditions and was estimated to affect up to 57 million people globally in 2022.¹ People living with dementia experience increasing declines in cognitive and physical function greater than natural ageing² and may require professional routine care, which is defined as care provided in either a home or a residential aged care facility (RACF).

Health outcomes are often assessed to understand the quality of care. However, outcomes and measures often vary, limiting the comparison across studies or over time. A core outcome set is an agreed-upon standardised set of outcomes recommended as a minimum for measuring and reporting on a specific health condition or population.³ Using core outcome sets enables comparability of the findings across different evaluations.⁴ The first core outcome set was initiated in 1970. The Core Outcome Measures in Effectiveness Trials initiative extended this work in 2010 to ensure standardised outcomes and measurement resources are online and publicly available. However, this initiative is exclusive to research trials, where measurements usually happen over short periods with a singular focus or only a few specific outcomes. In practice evaluation, multiple outcomes must be monitored and are expected to occur over time. Therefore, using a research-based core outcome set in practice evaluation can be challenging.

To date, several studies have been conducted to evaluate the quality of care for people living with dementia in acute care settings.⁵ However, the majority of people living with dementia reside in the community and receive routine care, highlighting the need to evaluate the quality of care provided to people living with dementia receiving routine care. The Medical Research Future Fund-funded Core Outcome Measures for Improving dementia Care (COM-IC) project is a broad collaborative effort focused on identifying and defining a core outcome set for the quality of routine dementia care in Australia. Outcomes important to stakeholders were identified through a modified Delphi process involving individuals living with dementia, carers (both formal and informal), researchers, clinicians, non-clinical practitioners and service providers.⁶ The modified Delphi process identified 13 core outcomes for people living with dementia (dignity; engagement in advance care planning (ACP); pain; quality of life (QoL); feeling safe and secure; emotional well-being; diagnosis of dementia; behavioural and psychological symptoms of dementia; the importance of relationships; meaningful activities; hygiene and comfort; resource utilisation; and safety incidents), and four core outcomes for carers of people living with dementia (informal carers’ QoL and educational opportunities, and formal carers’ morale and dementia-specific qualifications).⁷ Definitions of these 17 identified outcomes are outlined in table 1.

Table 1. Definitions of the core outcomes for the quality of dementia care in routine care settings.

Target population	Core outcomes for the quality of dementia care in routine care settings	Definition
People living with dementia	Dignity	Experience of being treated with respect.
	Engagement in advance care planning	Opportunity to discuss and to be supported in making an Advanced Care Plan.
	Pain	Unpleasant sensory experience associated with actual or potential body tissue damage.
	Quality of life	Experience of health and well-being
	Feeling safe and secure	Feeling psychologically safe, including not being punished or humiliated for sharing ideas, asking questions, voicing concerns or making mistakes
	Emotional well-being	Realising one’s potential, effectively coping with stress, working productively and contributing to the community.
	Diagnosis of dementia	Accurate diagnosis of dementia.
	Behavioural and Psychological Symptoms of Dementia	Neuropsychiatric symptoms that accompany the syndrome of dementia, such as delusions, hallucinations, apathy, anxiety, depression or disinhibition.
	Importance of relationships	Feeling connected with people who are important to self and others.
	Meaningful activities	Right to engage in tailored activities that align with the care recipient’s beliefs, preferences, needs and values.
	Hygiene and comfort	Hygiene—conditions and practices around cleanliness Comfort—Feeling free from pain and psychological distress.
	Resource utilisation	Use of healthcare and services
	Safety incidents	Unplanned event or circumstance which may result in harm to a care recipient.
Informal carers	Quality of life	Carer’s health and well-being while providing care at home.
	Educational opportunities	Resources and educational sessions for carers to learn more about dementia care
Formal carers	Morale	Work-related well-being satisfaction and engagement
	Dementia-specific qualifications	Understanding of dementia, its manifestation and appropriate care.

An informal carer is a non-paid carer, a formal carer is a professional and paid carer

The COM-IC project team recognised the importance of measuring these outcomes with validated scales.⁸ Information on validated scales for the identified core outcomes for routine dementia care has not previously been synthesised or described. As there are many potential scales, this study was designed to provide a starting point for working groups to conduct a more rigorous evaluation of the quality and suitability of the scales in measuring the quality of care provided to people living with dementia in routine care settings.

Methods

Design

A rapid review was conducted because this design allowed experienced researchers from an established research organisation to streamline the review process and extract descriptive information for stakeholder decision-making quickly and efficiently.⁹ Since there is no standard approach to reporting a rapid review, we employed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) extension for scoping reviews to present the study’s findings.¹⁰

The review addressed three key research questions:

1. What scales measuring 13 identified core outcomes for people living with dementia have been validated among people living with dementia?

2. What scales measuring four identified outcomes for carers of people living with dementia have been validated among carers of people living with dementia?

3. What are the descriptions of the validated or recommended scales (if a review is available)?

There are various forms of validation, including expert evaluation of content validity, face validity testing, construct validity testing, internal consistency reliability and test reliability testing.¹¹ The review included any scales for the identified outcomes that had undergone any form of validation, regardless of their quality or the outcomes of the validation. In this study, the term ‘validated scales’ refers to scales that have undergone some form of psychometric testing. When multiple validated scales for an outcome have been reviewed, some scales are shortlisted and recommended in an existing systematic review. The shortlisted validated scales are referred to as the ‘recommended scales’ in this review.

Search strategies

Search strategies were developed for each of the 17 core outcomes and were searched across six electronic databases (PubMed; Embase (Elsevier); CINAHL Complete (EBSCOhost); APA PsycINFO (EBSCOhost); Web of Science (Clarivate) and Scopus (Elsevier)) to retrieve peer-reviewed systematic reviews or original validation studies of scales measuring core outcomes for the quality of care provided to people living with dementia in routine care settings (home or RACF). No language or date restrictions were applied to the searches. The search strategies were developed in collaboration with a librarian. The database searches were run and the results exported on 7 June 2024, 20 June 2024, 11 July 2024 and 12 July 2024 (see online supplemental file 1). The reference lists of the included reviews were also searched to identify additional articles for inclusion.

Review criteria

Inclusion criteria were: (1) peer-reviewed systematic reviews or original validation studies of scales measuring identified core outcomes for quality of dementia care in routine care settings; (2) studies performed with people living with dementia or carers as appropriate and (3) full texts available and published in English. Studies were excluded if (1) they were qualitative and quantitative studies that used but did not validate the scales and (2) articles without full text, articles published in languages other than English, commentaries only or grey literature.

Study selection

All electronic database search outcomes were imported into COVIDENCE, an online platform for managing search and screening outcomes, and collaborating in screening and data extraction processes during review (https://www.covidence.org/), to automatically remove duplicates. The first author also conducted a screening process (title and abstract screening, followed by full-text screening) in COVIDENCE to select the studies that met the eligibility criteria. When a systematic review of available measures was identified in the searches, screening was discontinued, as the information from the systematic review was deemed sufficient for this rapid review.

Data extraction and synthesis

Descriptions include the scale’s name, the number of subscales and their names, the number of items, response options, scoring method, estimated time to complete the scale, recommended frequency of data collection, and the settings where the scale was first validated. The first author developed the data extraction form and extracted the relevant data. Findings are presented in figures, tables and narrative texts. Figures outline the number of validated scales to measure each identified core outcome. Tables provide brief descriptions of the recommended or identified validated scales. Narrative texts synthesise the review findings.

Patient and public involvement

The overarching COM-IC project adopts a participatory action research approach to codesign and involves people impacted by dementia (people living with dementia and carers) as integral contributors to all research activities, including this review.⁶ For this review, the core outcomes were selected by a Delphi panel which included people impacted by dementia.⁷ Members of the Stakeholder Reference Group also included people impacted by dementia who reviewed and provided feedback and advice on the measures identified in the rapid review, ensuring the scales accurately measure the determined outcome. While people impacted by dementia were not directly engaged in the screening and data extraction process, they were involved in identifying the core outcomes used as inputs for the review and contributed to the manuscript’s review, editing and submission. They will be further engaged in working groups, which will use the outcomes of this review as a starting point for identifying appropriate measures for outcomes they have identified as important. More information on the overall stakeholder engagement can be seen in our Standardised Data on Initiatives report.^{12 13}

Results

For each of the 17 outcomes, 19 665 records were identified from six databases. The title and abstract screening of three outcome measures (pain, cognition and QoL) was discontinued when sufficient evidence was identified in the form of systematic reviews. A total of 53 papers were included in this review, three being systematic reviews and 50 original validation studies. In brief, the reasons for excluding studies include (1) not the original validation of the scale, (2) irrelevant outcome, (3) non-dementia population, (4) full texts not available, (5) full texts not published in English and (6) not peer-reviewed. From the 53 included studies, 88 validated scales were identified (see figure 1).

Figure 1. Core outcome set for the quality of dementia care in routine care settings and their number of validated measurement scales. *A systematic review of the scales to measure this outcome is available.

The PRISMA flow diagram typically illustrates a single screening pathway and is not formatted to present the search and screening of 17 outcomes in one diagram. Therefore, a PRISMA chart for each outcome is included in the online supplemental file 1. Table 2 describes database searches and screening results, where applicable, for all outcomes.

Table 2. Summary of the database searches and screening outcomes.

Core outcome	PubMed	Embase	CINAHL	PsycINFO	Web of Science	Scopus	Manual add	Duplicates removed	Title, abstract screening: excluded	Full-text screening: excluded	Included studies
(1) Dignity	8	18	8	7	10	12	0	39	21	3	0
(2) Engagement in advance care planning	27	31	19	9	15	10	0	60	51	0	0
(3) Pain*	324	371	305	197	253	311	0	1096	NA	NA	1
(4) Quality of Life*	866	817	814	520	617	732	1	2570	NA	NA	2
(5) Feeling safe and secure	147	142	121	60	107	140	0	391	323	3	0
(6) Emotional well-being	16	12	8	10	11	10	2	42	23	1	3
(7) Diagnosis of dementia (cognition)*	2399	2858	1846	910	1076	1198	2	4663	NA	NA	3
(8) Behavioural symptoms of dementia	433	9	11	18	6	15	0	35	440	9	8
(9) The importance of relationships	0	0	0	0	0	0	0	0	0	0	0
(10) Meaningful activities	11	14	14	8	11	11	1	41	26	1	2
(11) Hygiene and comfort	46	101	97	24	39	54	0	161	192	4	4
(12) Resource utilisation	21	20	33	9	16	19	0	72	42	0	4
(13) Safety Incidents	14	42	17	6	9	79	0	41	123	3	0
(14) Dementia specific qualification	0	0	0	0	0	0	0	0	0	0	0
(15) Staff/carers’ morale	5	15	3	5	5	6	0	18	19	1	1
(16) Carer’s quality of life	216	185	202	119	132	193	0	608	407	20	12
(17) Educational opportunities	0	0	0	0	0	0	0	0	0	0	0

^*Systematic review available; we did not screen the references because the findings from the systematic review are sufficient to identify the existing validated scales. Additional manual searches were conducted to find the original development or validation studies of the recommended scales reported in the systematic reviews for the scales description

NA, not available.

Validated scales to measure core outcomes for people living with dementia

A list of validated or recommended scales to measure core outcomes for the quality of dementia care in routine care settings is presented in table 3.

Table 3. List of validated/recommended scales to measure patients’ core outcomes for the quality of dementia care in routine care settings.

Outcome	Scales
Pain	Facial Action Coding System
	Pain Assessment Checklist for Seniors with Limited Ability to Communicate (PACSLAC)
	PACSLAC-2
	Checklist for non-verbal pain behaviour
	DOLOPLUS-2
	ALGOPLUS
	Mobilisation-Observation-Behaviour-Intensity-Dementia (MOBID)
	MOBID-2 pain scale
Quality of life	Dementia Specific Quality of Life Instrument
	Alzheimer’s Disease Five Dimensions
Emotional well-being	Visual Analogue Mood Scale
	Dementia Mood Assessment Scale
	Dementia Mood Picture Test
Cognitive function for screening of dementia	Mini-mental state examination
	Montreal Cognitive Assessment
	Addenbrooke’s Cognitive Examination-Revised
	Rowland Universal Dementia Assessment Scale
	Kimberley Indigenous Cognitive Assessment
Behavioural symptoms of dementia	Neuropsychiatric Inventory (NPI)
	Brief Clinical Form of the NPI Questionnaire
	NPI—Nursing Home
	Behavioural Pathology in Alzheimer’s Disease Rating Scale
	Behaviour Rating Scale for Dementia
	Behavioural and Emotional Activities Manifested in Dementia
	Behavioural Syndromes Scale for Dementia
	Revised Memory and Behaviour Problems Checklist
	Caregiver Observation Behaviour Rating Assessment Scale
	Nursing Home Behaviour Problem Scale
	Multidimensional Observation Scale for Elderly Subjects
	Cohen-Mansfield Agitation Inventory
	Kingston Standardised Behavioural Assessment
Meaningful activities	Engagement in Meaningful Activities Survey
	Meaningful and Enjoyable Activities Scale
Comfort	Comfort Scale for Mild Dementia
	Comfort Assessment in Dying with Dementia Scale (EOLD)
	EOLD
	Discomfort Scale—Dementia of Alzheimer Type
Resource utilisation	Resource Utilisation in Dementia

EOLD, Evaluation of End-of-Life in Dementia.

Pain

A recent psychometric systematic review of the pain scales used for people living with dementia, nine scales were identified,¹⁴ including the Abbey Pain Scale,¹⁵ Algorithms for Pain Assessment ALGOPLUS,¹⁶ DOLOPLUS-2,¹⁷ Facial Action Coding System,¹⁸ Mobilisation-Observation-Behaviour-Intensity-Dementia (MOBID-2),¹⁹ self-reported pain through the numeric rating system or Visual Analogue Scale/thermometer or Philadelphia Geriatric Pain Intensity Scale; Pain Assessment Checklist for Seniors with Limited Ability to Communicate (PACSLAC/PACSLAC-2),²⁰ Pain Assessment in Advanced Dementia (PAINAD)²¹ and Checklist for non-verbal pain behaviour (CNPI).²² The review reported that the Facial Action Coding System,¹⁸ PACSLAC²³ and PACSLAC-2,²⁰ CNPI,²² DOLOPLUS-2,¹⁷ ALGOPLUS,¹⁶ MOBID²⁴ and MOBID-2 pain scale¹⁹ have good psychometric properties. The systematic review also reported limited psychometric evidence to support using the Abbey Pain Scale,¹⁵ PAINAD²¹ and self-reported pain through verbal rating pain scores¹⁴ in people living with dementia.

Quality of life

The QoL of people living with dementia is measured using both generic and dementia-specific scales. A recent psychometric systematic review focused on dementia-specific QoL scales and identified nine validated scales,²⁵ including QoL in Alzheimer’s disease (QOL-AD),^{26 27} QOL-AD–Nursing Home (QOL-AD NH),²⁸ Alzheimer Disease Related Quality of Life (ADRQL), ²⁹ ADRQL revised (ADRQL revised),³⁰ Quality of Life in Late-stage Dementia,³¹ Dementia Specific Quality of Life Instrument (QUALIDEM),³² Dementia Quality of Life (DEMQoL),³³ Quality of Life in Dementia (QOL-D),³⁴ and Dementia Care Mapping.³⁵ Of these scales, QUALIDEM is the best scale for measuring QoL for people living with dementia in nursing homes. While QOL-AD is widely used, its adapted version for nursing homes (QOL-AD NH) has poor psychometric properties. Recently, the AD 5 Dimensions (AD-5D)³⁶ (Dementia Utility Instrument) was developed. This preference-based scale also assesses the QoL for people living with dementia. Its responses can be converted for economic evaluation.

Emotional well-being

Three scales to measure emotional well-being were found, which had been validated among people living with dementia: the Visual Analogue Mood Scales,³⁷ Dementia Mood Assessment Scale³⁸ and the Dementia Mood Picture Test.³⁹

Diagnosis of dementia

A standardised series of questions cannot accurately diagnose dementia.⁴⁰ However, people can be screened for possible dementia using questionnaires that provide a score indicating changes in cognitive function. A recent systematic review identified 34 scales to assess cognitive function for dementia in primary care.⁴¹ The Mini–Mental State Examination (MMSE)⁴² is the most commonly used scale. The Six-Item Cognitive Impairment Test,⁴³ Abbreviated Mental Test,⁴⁴ General Practitioner Assessment of Cognition,⁴⁵ Mini-Cog,⁴⁶ Memory Impairment Screening,⁴⁷ Montreal Cognitive Assessment (MoCA)⁴⁸ and Short Test of Mental Status⁴⁹ are identified as alternatives to the MMSE when considering time for completion, sensitivity and specificity.⁴¹ The MoCA is considered to be a promising screening test,⁴⁸ while the Mini-Cog and the Addenbrooke’s Cognitive Examination-Revised are currently considered the best alternatives for screening for dementia in most populations.⁵⁰ In addition to the identified 34 scales, the Rowland Universal Dementia Assessment Scale⁵¹ is recommended in multicultural populations, and the Kimberley Indigenous Cognitive Assessment⁵² is recommended in indigenous populations.

Behavioural and psychological symptoms of dementia

12 validated scales measuring behavioural and psychological symptoms of dementia were identified,^{53 54} including The Neuropsychiatric Inventory (NPI),⁵⁵ the Behavioural Pathology in Alzheimer’s Disease Rating Scale (BEHAVE-AD)⁵⁶; Behaviour Rating Scale for Dementia⁵⁷; Behavioural and Emotional Activities Manifested in Dementia⁵⁸; Behavioural Syndromes Scale for Dementia⁵⁹; Ryden Aggressive Scale⁶⁰; Revised Memory and Behaviour Problems Checklist⁶¹; Caregiver Observation Behaviour Rating Assessment Scale⁶²; Nursing Home Behaviour Problem Scale⁶³; Multidimensional Observation Scale for Elderly Subjects⁶⁴; Cohen-Mansfield Agitation Inventory (CMAI)⁶⁵ and the Kingston Standardised Behavioural Assessment.⁶⁶ The NPI is a commonly used scale.⁶⁷ In addition to the original version, the NPI has two alternatives: the brief clinical form of the NPI Questionnaire (NPI-Q) and the NPI (Nursing Home) (NPI-NH).⁶⁸ The NPI-Q is for staff (clinicians) to complete, and the NPI-NH is an adapted version for use in nursing homes.

Meaningful activities

Two scales measuring meaningful activities were identified and validated among people living with dementia: the Engagement in Meaningful Activities Survey⁶⁹ and Meaningful and Enjoyable Activities Scale.⁷⁰

Hygiene and comfort

No scale that measures hygiene and comfort together was identified. No scale measuring hygiene has been validated for use among people living with dementia, but four scales measuring comfort have been validated, including the Comfort Scale for Mild Dementia.⁷¹ Evaluation of End-of-Life in Dementia (EOLD),⁷² the Comfort Assessment in Dying with Dementia scale (EOLD)⁷³ and Discomfort Scale–Dementia of Alzheimer Type.⁷⁴

Resource utilisation

One scale measuring resource utilisation for people living with dementia was identified: The Resource Utilisation in Dementia (RUD). This also has an original and shortened version (the RUD–Lite Version).⁷⁵

Outcomes without scales

The review identified no validated scales measuring dignity, engagement in ACP, feeling safe and secure, the importance of relationships, hygiene or safety incidents among people living with dementia.

Validated scales to measure core outcomes for carers of people living with dementia

A list of validated or recommended scales to measure the core outcomes of informal and formal carers for the quality of dementia care in routine care settings is presented in table 4.

Table 4. List of validated/recommended scales to measure carers’ core outcomes for the quality of dementia care in routine care settings.

Outcome	Scales
Informal carers’ quality of life	Carer’s quality of life
	Adult Social Care Outcomes Toolkit
	Caregiver-targeted quality-of-life measure
	Quality of life for carers of people living with dementia
	Long-Term Conditions Questionnaire for Carers
	Dementia Quality of Life Scale for Older Family Carers
	Family Quality of Life in Dementia scale
	Singapore Caregiver Quality of Life Scale
	Scale measuring the Impact of DEmentia on CARers
	Alzheimer’s Patient Partners Life Impact Questionnaire
Formal carers’ morale	Moral Distress in Dementia Care Survey instrument

Informal carers’ QoL

10 scales were identified as validated measurements for the QoL of informal carers of people living with dementia, including: the Carer’s Quality of Life⁷⁶; the Adult Social Care Outcomes Toolkit (Carer)⁷⁷; the Caregiver-Targeted Quality-of-Life measure⁷⁸; the Quality of Life For Carers of People Living With Dementia (C-DEMQOL)⁷⁹; the Long-Term Conditions Questionnaire for Carers⁸⁰; the DEMQoL Scale for Older Family Carers⁸¹; the Family QOL-D scale⁸²; the Singapore Caregiver Quality of Life Scale⁸³; the Scale measuring the Impact of DEmentia on CARers⁸⁴ and the Alzheimer’s Patient Partners Life Impact Questionnaire.⁸⁵

Formal carers’ morale

One validated scale was identified to measure the morale of formal carers of people living with dementia: the Moral Distress in Dementia Care Survey instrument.⁸⁶

No scale was identified to measure the importance of relationships for people living with dementia, the formal carers’ dementia-specific qualifications, or the educational opportunities for informal carers.

The rapid review also briefly described the identified or recommended scales measuring core outcomes for the quality of dementia care in routine care settings. Where systematic reviews of scales (pain, cognitive function for dementia) existed, only recommended scales were described. Otherwise, all identified validated scales were described (see onlinesupplemental files 2 3).

Discussion

This rapid review identified 88 validated scales to measure pain, QoL, emotional well-being, cognitive function, behavioural and psychological symptoms of dementia, meaningful activities, comfort, resource utilisation for people living with dementia, informal carers’ QoL and formal carers’ morale. The review also described 50 validated or recommended scales. Findings from this review can be integrated into existing dementia care outcome libraries, such as the IMPACT Collaboratory Patient and Caregiver Relevant Outcome Libraries (https://impactcollaboratory.org/learning-resources/pcro-library/), to create a more comprehensive and updated database. This information may provide future users with more insight into the validated or recommended scales to use when measuring the quality of care provided to people living with dementia in routine care settings.

Different from other measurement reviews, which usually focus on the scales for one specific outcome,^{87 88} this review covers 17 outcomes. The review found that many of the identified scales are in self-report form and assess outcomes for people living with dementia who may experience cognitive and communication impairment,⁸⁹ limiting them from self-reporting on these scales.⁹⁰ In several situations, proxies usually provided answers on the person’s behalf.⁹⁰ Research has also highlighted the disparities between people with dementia’s self-reports and proxy reports.⁹⁰ These disparities should be considered when interpreting the data.

Although the review included scales to assess cognitive function to screen for possible dementia, it is important to note that using screening tools to measure cognitive function in some settings and populations can result in inaccuracy,⁹¹ for example, there is a risk of bias when the scale is used for older people, people with low education levels and people with visual impairment. A systematic review suggested that functional assessment could be included in the screening of dementia due to its acceptable efficiency for people with advanced deterioration. Yet, functional scales are the least sensitive in the mild stages of dementia.⁹² Of the multiple scales for physical functioning, the Lawton Instrumental Activities of Daily Living Scale,⁹³ Functional Activities Questionnaire,⁹⁴ Amsterdam Instrumental Activities of Daily Living,⁹⁵ Amsterdam Instrumental Activities of Daily Living-short version, Barthel Index⁹⁶ and Katz Activities of Daily Living questionnaire⁹⁷ are recommended for use.⁹²

When selecting scales for use, their clarity, completion time, scoring approach and recommended frequency of data collection should be considered, as these factors can significantly influence the feasibility of implementing a scale. For example, the NPI, BEHAVE-AD and CMAI are gold standards for evaluating behavioural and psychological symptoms of dementia, but using these scales is time-consuming. Another example is the RUD questionnaire, which is commonly used to measure resource utilisation. RUD is lengthy and not intuitive to complete, making it time-consuming and less suitable for routine care. The Core Items for a Standardised Resource Use measure may be more feasible under time constraints. However, this measure has not been validated for use among people living with dementia and was therefore not included in this review.

This review included only scales validated for use with people living with dementia or their carers (informal and formal, as appropriate). As a result, some scales validated in other populations were excluded. While some scales are available to measure dignity, engagement in ACP, feeling safe and secure, hygiene and safety incidents, they have not been validated for use among people living with dementia. For instance, a recent systematic review identified 11 validated self-report scales measuring dignity,⁸⁸ including The Patient Dignity Inventory⁹⁸; Jacelon’s Attributed Dignity Scale⁹⁹; the Inpatient Dignity Scale¹⁰⁰; the Patient Dignity Question¹⁰¹; the Palliative Patients’ Dignity Scale¹⁰²; the Measurement Instrument for Dignity Amsterdam¹⁰³; the Measurement Instrument for Dignity Amsterdam—for Long-Term Care Facilities¹⁰⁴; the Questionnaire of Sense of Self-Dignity; ¹⁰⁵ the Dignity Instrument¹⁰⁶ and the Dignity Questionnaire.¹⁰⁷ Of these, the Patient Dignity Inventory, Jacelon’s Attributed Dignity Scale and the Inpatient Dignity Scale were the most commonly used. There are other examples of scales which have been validated in different populations, but not yet for people living with dementia. For ACP, the ACP Engagement Survey¹⁰⁸ has been validated. For feeling safe and secure, the Resident Measure of Safety in Care Homes¹⁰⁹ and the Neuroception of Psychological Safety Scale¹¹⁰ have been validated. For hygiene, the hygiene inventory HI27¹¹¹ has been validated. For safety incidents, the global trigger tool^{112 113} has been validated. Future research may consider validating such scales among people living with dementia for use in practice.

Cognitive impairment and communication difficulty among people living with dementia can be barriers for them to participate in research, including studies to validate a scale.^{89 90} For this reason, validation studies have generally been conducted among people living with dementia who have a higher level of cognition.¹¹⁴ Pictures have been used to help facilitate self-reporting among people who experience challenges with reading and understanding.115,117 A recent systematic review reported that picture-based scales can have a superior effect on the comprehension of conversations and decision-making abilities in people living with dementia,¹¹⁸ suggesting that using pictures to facilitate communication for people living with dementia may be another potential strategy to improve participation in the validation process.

This review also did not identify any validated scale to measure the importance of relationships for people living with dementia, formal carers’ dementia-specific qualifications and informal carers’ educational opportunities. This highlights a need to develop validated scales for measuring these specific outcomes, which have been identified as core. A potential reason for the lack of a scale to measure the importance of relationships in the current literature may be related to the difficulty of achieving consensus on how the concept should be operationalised. Regarding the scales to measure dementia-specific qualifications for formal carers of people living with dementia, people living with dementia emphasised that the quality of care was not entirely related to formal qualifications, but more related to practical knowledge of how to communicate and interact with people with dementia appropriately. Therefore, people living with dementia suggested assessing dementia knowledge rather than dementia-specific qualifications for formal carers of people with dementia. There are several validated scales available to measure carers’ understanding of dementia,¹¹⁹ including the Dementia Knowledge Assessment Scale (DKAS),^{86 87} Dementia Knowledge DK-20,⁸⁸ the UJA Alzheimer’s Care Scale,⁸⁹ the Alzheimer’s Disease Knowledge Scale⁹⁰ and the DKAS version 2.¹²⁰ These can be considered as a measure of formal carers’ knowledge of dementia, as their implementation of up-to-date clinical practice guidelines is a key factor in maintaining the continuity of quality care as dementia progresses.¹²¹ Finally, a potential reason for the lack of a scale to measure the importance of relationships in the current literature is that research priorities are often patient or clinically focused, rather than focusing on informal carers or non-clinical outcomes.

Strengths and limitations

This rapid review conducted comprehensive searches for 17 outcomes separately in six electronic databases, which maximised the number of relevant papers and optimised the opportunities for identifying the validated scales for each outcome. In addition to identifying the scales, the review also included a brief description of the validated/recommended scales. This description provides valuable information for working groups to conduct a more rigorous evaluation of the quality and suitability of measures of quality in dementia care within routine care settings.

However, to provide timely advice to support stakeholder decision-making regarding outcome measurements, only the first author screened the articles and performed data extraction. As a result, the results may be associated with potential error and bias. Before conducting this rapid review, stakeholders with experience of dementia were engaged in discussions on potential scales. Findings from this discussion were used to cross-check with the rapid-view findings to minimise the chance of errors related to the rapid review process. Findings that some scales have been validated in routine care settings support their relevance for future consideration. However, since the review only included original validation studies, the absence of evidence that other scales have been validated in routine care settings does not mean they are irrelevant. These scales may be validated in such settings in later studies. Therefore, a further systematic review that includes all validation studies is recommended to confirm their irrelevance. Finally, the quality assessment of the included studies was not performed in this rapid review, limiting the understanding of the quality of the included studies. The review focused on identifying and describing the scales rather than assessing their measurement quality. Although the review included scales validated among people living with dementia or their carers as appropriate, the review did not examine the veracity of the validations. A further psychometric systematic review would provide helpful information to support decision-makers in selecting quality scales for their measurements.

Conclusions

This rapid review identified and described validated/recommended scales to measure pain, QoL, emotional well-being, cognitive function, behavioural and psychological symptoms of dementia, meaningful activities, comfort, resource utilisation for people living with dementia, informal carers’ QoL and formal carers’ morale. Findings from this review provide helpful information for working groups to conduct a more rigorous evaluation of the quality and suitability of measures in dementia care within routine care settings. This review also offers COM-IC stakeholders and other potential users with information on the validated/recommended scales to measure some core outcomes for the quality of care provided to people living with dementia in routine care settings.

Data availability statement

All data relevant to the study are included in the article or uploaded as supplementary information.