Table 1 Study characteristics overview of included studies

An exploration of pain documentation for people living with dementia in aged care services

Andrews S.M. et al., 2019 Australia [61]

To assess the quality and completeness of pain documentation by nurses

People with moderate to severe dementia: n = 114

Pain episodes: n = 169

Pain Management Nursing. IF: 1.929

• One pain episode was documented in 86% of residents

• 29% of pain episodes had no documentation on how nurses identified pain in People with dementia

• In n = 120 People with dementia pain identification was documented using no assessment tools

• Personal care assistants were responsible for more episodes of assessment documented compared with nursing staff (50% vs. 18%)

An exploration of nursing home managers` knowledge of and attitude towards the management of pain in residents with dementia

Barry, H.E. et al., 2012 United Kingdom / Ireland [62]

To explore the knowledge, attitudes and beliefs that nursing home managers hold regarding pain assessment, in People with dementia

Nursing home managers: n = 96

International Journal of Geriatric Psychiatry. IF: 2.419

• Nursing home managers share different opinions with regards to how assess and manage pain in People with dementia

• Barriers in the assessment of pain are: missing report about pain from the People with dementia, lack of time to assess pain in People with dementia, and lack of standardised approach to treat pain

Recognising pain in older adults living in sheltered accommodation: the views of nurses and older adults

Blomqvist K. and Hallberg I.R. 2001 Sweden [72]

To illustrate nurses and older adults views about how to recognise the presence of pain in older adults with dementia living in special needs housing

Contact nurses and Older adults with frequent pain and cognitive impairment: n = 24

International Journal of Nursing Studies. IF: 3.783

• 24 of 42 cognitively impaired people were often in pain

• 16 of 24 were in pain every day

• pain recognition is a communicative interactive process based on verbal and non-verbal expressions

Pain relief at the end of life: Nurses’ experiences regarding end-of-life pain relief in Patients with dementia

Brorson, H. et al., 2014 Sweden [73]

To describe nurses' experiences regarding end-of-life pain relief in patients with dementia

Nurses: n = 7 with no formal palliative care or pain management training in People with dementia

Pain Management Nursing. IF: 1.929

• Nurses' experiences of resources concerning pain relief with the subcategories: ability to understand the needs of the patient, interpersonal relationships, cooperation centring on the individual, feeling of satisfaction to relieve suffering with pharmacological pain relief options, and feeling of satisfaction to relieve suffering with nonpharmacological pain relief options

Challenges for professional care of advanced dementia

Chang, E. et al., 2009 Australia [74]

To expose the challenges for key professional providers of care for people with advanced dementia living in residential age care facilities

Nurses: n = 24 (Director of nursing n = 2; Registerd nurses from different specialities = 15; nurses = 2, Nursing assistants = 5

International Journal of Nursing Practice. IF: 1.133

• Challenges for key professional carers: identified main areas: Key professional carers felt 1) Lack of knowledge and skills in the direct provision of care with regards to symptom management; 2) lack of knowledge relating to dementia as a disease; 3) Lack of knowledge relating to palliative care

• Participants emphasized the need to improve knowledge and skills and the need for policy changes

Concept analysis of nurses' identification of pain in demented patients in a nursing home: development of a hybrid model

Chang, S. et al., 2011 Korea [75]

To clarify and conceptualize the phenomena of pain identification in nurses caring for People with dementia

Nurses (> 3 years nursing home experience): n = 13

Pain Management Nursing. IF: 1.929

• Nurses identified and managed pain in the constant process of nursing: 1) an active process integrating every expressional cue of patients until pain relief was achieved, 2) a cyclic process that begins upon a patient's expression of pain 3) an active process of comparison on patient's usual expressive patterns

Pain Assessment Practices with Nursing Home Residents

Clark, L. et al.,

2004 USA [76]

To determine how nursing home staff currently think about and conduct resident pain assessments

Focus groups with 3 to 20 participants per group (Registered nurses*, Certified nursing assistants*, and allied health care professionals): n = 20

*Only data from Registered nurses and Certified nursing asstistants charted

Western Journal of Nursing Research. IF: 1.217

• Uncertainty in pain assessment

• Relationship-centred cues to residents' pain

• Behavioural and visual cues to residents' pain

• Complications of resident characteristics and attitudes in the accurate assessment of pain

• Relationship to the People with dementia as well as staff knowledge of residents' usual behaviour process were in most cases the foundation in the identification of pain

Cues for the identification of pain in nursing home residents

Closs, S. et al., 2005 United Kingdom / England [77]

To identify a range of cues from which pain was understood by nurses for residents with various levels of cognitive impairment

Nursing home staff: n = 65 and informal carers (relatives and friends): n = 36 of 113 residents from n = 15 UK nursing homes

International Journal of Nursing Studies. IF: 3.783

• Verbal or body language cues

• Acute behavioural cues, and general changes in behaviour or mood

• Body movements were the most frequently used indicator of pain and were increasingly used as guidance when cognition deteriorated

Nursing Staff Members' Perceptions of Pain Indicators in Persons with Severe Dementia

Cohen-Mansfield J. and Creedon, M. 2002 USA [78]

To assess nursing staff members' perceptions of behavioural expression of pain

Nursing staff: n = 29 (Nurse managers: n = 7; Charge nurses: n = 7; Nursing Assistants: n = 15)

The Clinical Journal of Pain. IF: 2.893

• Behavioural expression of pain such as facial grimacing = 76%

• Increased agitation as indication of pain = 49%

• Observation of the People with dementia by touching a particular body part = 45%

• Sudden limping, changes in vital signs, and falls are to the evidence new clues to assess pain in People with dementia

Assessment and treatment of behaviour problems in dementia in nursing home residents: a comparison of the approaches of physicians, psychologists, and nurse practitioners

Cohen-Mansfield, J. et al., 2012 USA [63]

To compare physicians, psychologists, and nurse practitioners approaches to the assessment and treatment of dementia-related behaviour problems in nursing home residents

Total participants: n = 246 Medical doctors: n = 108; Psychologists: n = 38; Nurse practitioners: n = 100. *Only data from Nurse practitioners charted

International Journal of Geriatric Psychiatry. IF: 3.485

• Resisting care and disruptive vocal/verbal behaviours were the most common symptoms noted by all professions

• NPs were significantly more likely to speak with family and to observe the resident outside of the formal assessment

Exploring healthcare assistants’ role and experience in pain assessment and management for people with advanced dementia towards the end of life: a qualitative study

De Witt Jansen, B. et al., 2017 United Kingdom / Ireland [81]

To explore Health care assistants perspectives and experiences of pain assessment and management in people with advanced dementia approaching the end of life in hospice, acute care and nursing home settings

Total: n = 14; Health care assistants from Nursing home: n = 9; Health care assistants from acute care: n = 2; Health care assistants from hospice: n = 3

BMC Palliative Care. IF: 2.015

• Recognising pain (knowing the resident, observing and interpreting behavioural and nonverbal indicators of pain)

• Reporting pain (positive work-related identities and relationships, negative work-related identities and relationships)

• Training and upskilling

Emergency nurses evaluation of observational pain assessment tools for older people with cognitive impairment

Fry, M. et al., 2017 Australia [79]

To identify emergency departments nurses’ perceptions of the feasibility of Pain Assessment in Advanced Dementia Scale to assess, monitor and manage pain in people over 65 with Cognitive Impairment and the utility of Pain Assessment in Advanced Dementia Scale when compared to other pain assessment observational tools (the Abbey Pain Scale, Doloplus-2 and PACSLAC-Scale)

Nurses: n = 36 (total); Focus-groups: n = 6 (in three different hospitals)

Journal of Clinical Nursing. IF: 3.036

• PAINAD gives structure to pain assessment

• PAINAD assists to convoy pain intensity

• Pain assessment tools, such as PAINAD tool, have the potential to achieve greater consistency within ED practice with minimal impact on workload

Understanding Nurses Decisions to Treat Pain in Nursing Home Residents with Dementia

Gilmore-Bykovskyi A.L. and. Bowers B.J 2013 USA [80]

To examine nurse’s decision-making to pharmacologically treat pain in People with dementia living in a nursing home

Nurses: n = 13 (Registered nurses: n = 10; Licenced practice nurse: n = 3)

Research in Gerontological Nursing. IF: 1.571

• Nurses perceived level of certainty about the presence of pain in People with dementia with the most significant factor in determining whether and how quickly resident`s pain would be treated pharmacologically

• The developed concept revealed different definitions of pain indicators such as behavioural, visible, non-visible, and self-report

Evidenced based assessment of acute pain in older adults

Herr, K. et al., 2004 USA [64]

To report baseline and pre-intervention data from medical records of patients (> 65 years) and from questionnaires regarding pain management practices, completed by nurses. *only data from People with dementia were used

Patients: n = 709 (with dementia: n = 181) from n = 12 acute geriatric settings. Questionnaires completed by nurses: n = 172

The Clinical Journal of Pain. IF: 2.893

• People with dementia had a higher percentage of pain assessment every four hours over the 72-h period

• People with dementia had fewer reassessment within 60 min in the entire 72-period

• People with dementia had at least one assessment of pain intensity using a rating scale (P < .0001)

• Most nurses (93.6%) believe that the use of a pain rating scale is the preferred practice, but only 41.9% are using a pain rating scale on a regular basis;

• The greatest challenge for nurses to assess pain was difficulty in communicating with People with dementia

Registered Nurses’ View of Performing Pain Assessment among Persons with Dementia as Consultant Advisors

Karlsson, C. et al., 2012 Sweden [82]

To illustrate registered nurses` view of pain assessment in People with dementia in relation to their nursing profession role as consultant advisor

Registered Nurses: n = 11

The Open Nursing Journal

IF: 1.363

• Four categories were identified amongst RNs with regards to their view of pain assessment in their role as nurse consultants:

1) Estrangement from practical nursing care (e.g., by feeling of remoteness from patient)

2) Time consuming and unsafe pain documentation (e.g. being a second-hand receiver of pain information)

3) unfulfilled needs of reflection possibilities (e.g. Being in a supervisor role)

Certified nursing assistants' perception of pain in people with dementia: a hermeneutic enquiry in dementia care practice

Karlsson, C. et al., 2013 Sweden [83]

To interpret certified nursing assistants' perception of pain in people with dementia in nursing care practice

Certified nursing assistants: n = 12

Journal of Clinical Nursing. IF: 3.036

• CNAs perspective origins in being close and familiar with the People with dementia rather than referring to medical knowledge

• Perceptions arise in three several phases in CNAs: being in the facing phase (e.g. Observing expressions of pain), being in a reflective phase (e.g. comparing a People with dementias behaviour with his/her behaviour from recent days), and being in an acting phase (e.g. examining physical sign of pain)

Home healthcare teams' assessments of pain care recipients living with dementia: a Swedish exploratory study

Karlsson, C. et al., 2015 Sweden [84]

To explore home healthcare teams' experiences of pain assessment among care recipients with dementia

Nurses: n = 23 (total); Registered nurses: n = 13; Certified nursing assistants: n = 10

International Journal of Older People Nursing. IF: 2.115

• Four interventions, which describe home healthcare teams' experiences of assessing pain were developed:

The need for trusting collaboration, the use of multiple assessment strategies, maintenance of staff continuity in care and assessment situations, and the need for extended time to assess pain

Caring for cognitively impaired nursing home residents with pain

Kenefick A.L. . 2004 England [85]

To describe beliefs and behaviours of registered nurses regarding the assessment of pain in cognitive impaired nursing home residents

Nurse key informants (head nurses): n = 3

International Journal for Human Caring. NK

• Nurses were more concerned with the characteristics of the nurse than they were with characteristics of the resident to identify and assess pain in People with dementia

• Personal knowledge of the resident and nurse-resident interaction was essential to the identification of the resident with pain

• Ability to identify important aspects of a resident's behaviour was improved by knowing the individual resident and their experience in geriatric nursing

Decision-making in caring for people with dementia at the end of life in nursing homes

Koppitz, A. et al., 2016 Switzerland [86]

To understand nurses' decision-making process about symptom management for people with dementia in nursing homes in their terminal phase of life

Nursing home staff (Registered nurses, Health care assistants, Nursing aids): n = 32

International Journal of Palliative Nursing. IF: 0.72

• Factors influencing nurses' decision-making-process: infrastructure; time allocated to individual residents; the attitude of the nurses and their managers towards the quality of care of People with dementia in order for nurses to reflect with other HCPs and informal carers involved in the care of the person with dementia

Nurses' perceptions of pain assessment and treatment in the cognitively impaired elderly: It's not a guessing game

Kovach, C. R. et al., 2000 USA [87]

To describe nurses' perceptions regarding the assessment and treatment of pain in patients with late-stage dementia

Nurses for single interviews (Licenced practice nurses = 53%; Registered nurses = 47%): n = 30; Care nurses in focus-group for rating: n = 16

Clinical Nurse Specialist. IF: 1.067

• Signs and symptoms of pain: facial grimacing and restless body movements were the most common signs described

• Decreased appetite and combative behaviour were other common symptoms

• Pain medication should more often be used as the first pharmacologic intervention to treat behavioural symptoms

Experience of registered nurses in assessing postoperative pain in hip fracture patients with dementia

Krupic, F. et al., 2018 Sweden / Bosnia Herzegovina [90]

To explore the experience of registered nurses in assessing pain in hip fracture in patients with dementia in the postoperative setting

Registered nurses: n = 51

Medicinski Glasnik. IF: 0.99

• Nurses' factors that influence their assessment of pain in People with dementia after surgery are illustrated in two main categories (visual assessment and communication)

• Seven subcategories (facial expression, body language, behavioural changes, being informed about dementia patients, communication about pain, reporting pain, suggestions for improvement) underpinning a visual than a communicative approach to assess pain

Experience of nurses in assessing postoperative pain in hip fracture patients suffering from dementia in nursing homes

Krupic, F.et al., 2020a Sweden / Bosnia Herzegovina [88]

To explore the experience of registered nurses in the assessment of pain and communication with hip fracture patients with dementia in nursing homes

Registered nurses: n = 24

Medicinski Glasnik. IF: 0.99

• Nurses approach pain assessment of a post-surgical People with dementia after hip-fracture by communicating verbally, then by using non-verbal communication (e.g. touching the People with dementia), before doing a pain assessment using a holistic approach

• Nurses felt scope for improvement (e.g. more time available) to be helpful in the assessment of pain

Experience of Intensive Care Nurses in Assessment of Postoperative Pain in Patients with Hip Fracture and Dementia

Krupic, F. et al., 2020b Bosnia Herzegovina/ Sweden [89]

To explore the experience of intensive care nurse’s assessment of pain in patients with hip fracture and dementia in the post-operative setting

Intensive care nurses: n = 21

Mater Sociomed

IF: NK

• Nurses assess pain in People with dementia after surgery of a hip-fracture by communicating with the People with dementia before looking out for visual signs of pain (e.g. expression of pain through body language)

• Lack of knowledge about the People with dementia influence pain assessment

Concept Development of Identification of Discomfort for Nursing Home Patients with Advanced Dementia

Lee, S.J. et al., 2020 Korea [91]

To facilitate the assessment of discomfort in People with dementia, living in a nursing home, by nurses and caregivers for concept development purposes

For fieldwork:

*Nurses: n = 12; *Care helpers: n = 8; Physiotherapist: n = 5; Social workers: n = 5; Occupational therapist: n = 1. *Only data from Nurses and care helpers charted

International Journal of Nursing Knowledge. IF: 1.222

• Identification of discomfort is a complex phenomen because of the People with dementias indirect expression of discomfort (e.g. by getting agitated)

• Nurse`s interactive and confirmative process of sympathetically diagnosing a People with dementias unmet needs by taking a holistic approach involving other caregivers into the process

The assessment and management of pain in patients with dementia in hospital settings: a multi-case exploratory study from a decision-making perspective

Lichtner, V. et al., 2016 England, Scotland, USA [92]

To understand how pain is recognised, assessed, and managed in patients with dementia by health care professionals in acute hospital settings

Interviews: Health care professionals: n = 52 (*Health care assistants: n = 7; *Nurses: n = 31; Physicians: n = 3; Medical consultants: n = 5; Pharmacist: n = 1; Physiotherapiests: n = 1; Clinical educators: n = 4); Informal carers: n = 4

*Only data from Health care assistants and Nurses charted

BMC Health Services Research. IF: 1.987

• In order to recognise, assess, and manage pain in People with dementia in the acute hospital setting, various information sources and individuals at different times and in different places need to be present

• Four over-arching themes identified during interviews to understand how pain in People with dementia was assessed: communication pain with dementia, carer-clinician communications, trials with therapy, putting a picture together

End-of-life care for people with advanced dementia and pain: a qualitative study in Swedish nursing homes

Lundin E. and Godskesen T.E. 2021 Sweden [93]

To describe the experiences of pain management of nurses in caring for people with advanced dementia and pain at the end of life

Nurses: n = 13 (Registered nurses = 11; nurses = 2)

BMC Nursing. IF: 2.59

• Challenges in terms of assessing and relieving pain (communication) such as uncertainties when to assess pain

• The influence of relatives (relational), and time constraints due to various reasons (organisational) were described by nurses caring for People with dementia

Complexities of pain assessment and management in hospitalised older people: A qualitative observation and interview study

Manias E. 2012 Australia [94]

To examine how pain was assessed and managed in older patients who were admitted to geriatric evaluation and management units

Sample Geriatric patients: n = 285 including n = 15 patients with cognitive impairment; Registered nurses: n = 34

International Journal of Nursing Science. IF: 2.62

• Insight into how nurses communicate with each other and with older patients about pain assessment and management in geriatric evaluation and management units—four major themes were identified: communicating among nurses and between older patients and nurses; strategies for pain management; environmental and organisational aspects of care. *from this study, one paragraph explaining about physical observation of pain in People with dementia was extracted for the review

Assessment of pain in cognitively impaired (CI) older adults in long-term care

Mezinskis, P. M. et al., 2004 USA [65]

To examine formal and informal methods of pain assessment nurses and caregivers use for cognitively impaired people

Long term care facilities: n = 14. Nurses: n = 160 direct caregivers (n = 35 Registered nurses; n = 41 Licenced practice nurses; n = 81 Certified nursing assistants). Residents: n = 307 Cognitively impaired older adults with chronic painful illness

Geriatric Nursing. IF: 2.361

• About 60% of RNs used formal pain assessment tools together with informal pain assessment methods (e.g. Change in usual behaviour)

Pain management nursing practice assessment in older adults with dementia

Minaya-Freire, A. et al., 2021 Spain [65]

To assess pain management nursing practice in older adults with dementia through electronic health records

Electronic health record review from 18 Registered nurses on a 24-bed ward

People with dementia included: n = 111

Nursing Open. IF: 1.363

• Pain intensity was assessed a median of 1.9 times per day of stay, more of the assessments were made during late shift (39%)

Decision factors nurses use to assess pain in nursing home residents with dementia

Monroe, T. B. et al., 2015 USA [95]

To assess nurses cues and practices to identify and alleviate pain in People with dementia, living in the nursing home

Nurses (not specified): n = 29; four focus groups from two facilities

Archives of Psychiatric Nursing. IF: 1.266

• In identifying pain, nurses felt to "put together" a complex jigsaw puzzle to elevate the People with dementias pain

• Five subthemes were identified: 1) Uncertainty about the pain experience of residents with dementia, 2) being a detective, 3) clarifying factors, 4) conflict resolution (balancing family wishes and resident's needs), 5) role of the nurse

E-Learning course for nurses on pain in patients unable to self-report

Muñoz-Narbona, L. et al., 2020 Spain [67]

To assess knowledge on pain assessment in nurses following an online training course. *For this study, only data from the pre-course assessment were used

Nurses (not specified): n = 401

Nurse Education in Practice; IF: 2.281

• 37.7% reported having no specific training on pain and just 32.2% reported using the PAINAD-Sp scale; 32.2.% was unable to specify the method used to assess pain, 19.4% are discussing the pain assessment with the physician and 16.2% were consulting relatives

Silent and suffering: a pilot study exploring gaps between theory and practice in pain management for people with severe dementia in residential aged care facilities

Peisah, C. et al., 2014 Australia [96]

To explore attitudes and processes relating to pain assessment and management for people with severe dementia in residential aged care facilities

Nurses: n = 20 (n = 4 care managers; n = 10 Registered nurses; n = 6 personal care workers. Residential aged care facility: n = 15

Clinical Interventions in Aging. IF: 4.458

• All facilities use Abbey Pain Charts and two the Pain Assessment in Advanced Dementia Scale

• Time and Frequency of assessment was regulatory-driven

• Seven out of 20 reported behaviour changes as trigger for pain assessment, CNAs detect pain—RNs initiate treatment

Communication and assessment of pain in hip fracture patients with dementia—experiences of healthcare professionals at an accident and emergency department in Sweden

Seffo, N. et al., 2020 Sweden [97]

To describe the experience of healthcare professionals in assessing pain and communication in patients with hip fractures and dementia on an ED (emergency department)

Nurses: n = 21 (n = 17 Registered nurses; n = 4 Nurse assistants)

Medicinski Glasnik. IF: 0.99

• Three main categories identified where assessment and communication is time pressured: 1) arrival at the emergency department: patients with dementia cannot be left alone in a room without supervision, someone has to be ready to intervene quickly and the interaction and communication is important, 2) hip track: patient with fracture and dementia should not stay at ED, and instead go to the ward immediately 3) handover to the ward: often the ward is unable to receive patients

Pain Assessment and Dementia—German Results from a European Survey

Sirsch, E. et al., 2015 Germany, Austria, Switzerland [68]

To develop a toolkit for pain assessment in people with cognitive impairment

Nurses (with range of qualifications and specialities): n = 209 Others: n = 6

Pflege und Gesellschaft—Zeitschrift für Pflegewissenschaft. IF: NK

• Pain assessment is performed almost exclusively by nurses, 44% of respondents do not use guidelines and standards

• 52% do not use a standardized observation tool to assess pain

• Uncertainty, lack of objectivity, lack of time, and lack of knowledge contribute to barriers of pain assessment

Nurse recognition of delirium superimposed on dementia in hospitalized older adults

Steis, M.R., 2009 USA [69]

To explore acute care nurses' recognition of delirium in hospitalized older adults with dementia

Review of nursing records (n = 108) n = 140 hospitalized older adults with dementia

Dissertation in Nursing. IF: NA

• The most significant finding from this study was the absence of patient days on which nurses recognized delirium in this population of hospitalized older adults with dementia

• Nurses more likely to document disturbance of consciousness

Acute hospital dementia care: results from a national audit

Timmons, S.et al., 2016 Ireland [70]

To assess the quality of dementia care in acute hospitals in the Republic of Ireland

Acute public hospitals (n = 35) tracking the quality of care received by n = 660 patients. Interviews with n = 76 ward managers

BioMed Central Geriatrics. IF: 3.077

• Pain and functioning is underassessed in people with dementia

• Assessment for cognition (43%) and delirium (30%) was inadequate

Pain in older adults with dementia: A survey across Europe on current practices, use of assessment tools, guidelines and policies

Zwakhalen, S. et al., 2018 Austria, Belgium, Denmark, Germany, Netherlands, Switzerland, United Kingdom [71]

To explore the Health care professional`s use of existing tools to assess pain and to identify attitudes towards assessment tools in older adults with cognitive impairment

Health care professionals and care assistants: (n = 810; n = 206 HCP in hospital care; n = 127 long term care; n = 38 primary care; n = 439 unknown setting/

Der Schmerz; IF: 1.107

• Less than half of healthcare staff are using specific pain assessment tools

• Most health care professionals do not feel competent enough in pain assessment. Most pain assessment is done during routine care