Sandra M.G. Zwakhalen

Pain in elderly people with severe dementia: A systematic review of behavioural pain assessment tools

BackgroundPain is a common and major problem among nursing home residents. The prevalence of pain in elderly nursing home people is 40–80%, showing that they are at great risk of experiencing pain. Since assessment of pain is an important step towards the treatment of pain, there is a need for manageable, valid and reliable tools to assess pain in elderly people with dementia.MethodsThis systematic review identifies pain assessment scales for elderly people with severe dementia and evaluates the psychometric properties and clinical utility of these instruments. Relevant publications in English, German, French or Dutch, from 1988 to 2005, were identified by means of an extensive search strategy in Medline, Psychinfo and CINAHL, supplemented by screening citations and references. Quality judgement criteria were formulated and used to evaluate the psychometric aspects of the scales.ResultsTwenty-nine publications reporting on behavioural pain assessment instruments were selected for this review. Twelve observational pain assessment scales (DOLOPLUS2; ECPA; ECS; Observational Pain Behavior Tool; CNPI; PACSLAC; PAINAD; PADE; RaPID; Abbey Pain Scale; NOPPAIN; Pain assessment scale for use with cognitively impaired adults) were identified. Findings indicate that most observational scales are under development and show moderate psychometric qualities.ConclusionBased on the psychometric qualities and criteria regarding sensitivity and clinical utility, we conclude that PACSLAC and DOLOPLUS2 are the most appropriate scales currently available. Further research should focus on improving these scales by further testing their validity, reliability and clinical utility.

Worry in Normal Children

OBJECTIVE To investigate worry in a nonclinical sample of children aged 8 to 13 years (N = 193). METHOD Children were interviewed about the content, characteristics, origins, and severity of their main intense worry. Furthermore, children completed questionnaires to study the relationship between worry, trait anxiety, and depression. RESULTS Almost 70% of the children reported that they worried every now and then. The content of these worries predominantly pertained to school performance, dying and health, and social contacts. An examination of the characteristics of childrens main intense worries revealed that these worries occurred on average 2 to 3 days per week, were accompanied by modest levels of interference and anxiety, elicited relatively high levels of resistance, and were rather difficult to control. A minority of the children were found to exhibit symptoms of worry in the pathological range: the percentages of children who met the DSM-III-R criteria of overanxious disorder and generalized anxiety disorder were 4.7% and 6.2%, respectively. Finally, worry, anxiety, and depression seemed to be strongly related. CONCLUSION Worry seems to be a common phenomenon in normal children aged between 8 and 13 years.

The psychometric quality and clinical usefulness of three pain assessment tools for elderly people with dementia

&NA; In view of the need for valid, reliable, and clinically useful scales to assess pain in elderly people with dementia, this study evaluated the psychometric properties of translated versions of the PAINAD, PACSLAC, and DOLOPLUS‐2 scales. In an observational study design, two raters simultaneously assessed the nursing home residents (n = 128) for pain during influenza vaccination and care situations. The PACSLAC was valued as the most useful scale by nurses. Cronbachs alpha was high (>.80) for the total scale at T2 and T3 and adequate for the ‘Facial expression’ and ‘Social/personality/mood’ subscales. IC scores for the ‘Activity/body movement’ and ‘Physiological indicators/eating/sleeping changes/vocal behaviors’ subscales were low. It demonstrated good validity and reliability, although the scale should be further refined. This refinement should increase homogeneity. The PAINAD showed good psychometric qualities in terms of reliability, validity, and homogeneity (&agr; ranged .69–.74 at T2 and T3) (except for the ‘Breathing’ item). The PAINAD scale had lower scores for clinical usefulness in this sample. The Dutch version of the DOLOPLUS‐2 was considered more difficult to use but showed acceptable psychometric qualities in terms of the issues assessed, except for the ‘psychosocial reactions’ subscale. IC of the DOLOPLUS were adequate for the total scale (&agr; ranged .74–.75) and almost all subscales (&agr; ranged .58–.80). Findings of this study provide evidence of validity and reliability of the three pain assessment scales. Now that a pain scale is available, future studies also need to focus on its implementation in nursing practice.

The prevalence of pain in nursing home residents with dementia measured using an observational pain scale.

Background: Studies on pain and pain prevalence in older people with dementia are limited compared to those on cognitively intact older people. Pain prevalence rates in older people with dementia are estimated to be between 28% and 83%.

Factors associated with quality of life of people with dementia in long-term care facilities: A systematic review

BACKGROUND Quality of life has become an important outcome measure in dementia research. Currently there is no convincing evidence about which factors are associated with quality of life of people with dementia living in long-term care facilities. OBJECTIVE This study aims to investigate which factors are associated with quality of life, including factors associated with change over time, of people with dementia living in long-term care facilities. DESIGN A systematic literature review was performed. DATA SOURCES Cochrane, Pubmed, CINAHL, Web of Science, and PsycINFO were searched. REVIEW METHODS Three researchers independently assessed studies for eligibility. The inclusion criteria were: (1) the primary focus was on factors related to quality of life; (2) the study was performed in long-term care facilities; (3) the study regarded quality of life as multidimensional construct. Methodological quality of studies included in the review was assessed with a quality criteria checklist. RESULTS Ten cross-sectional and three longitudinal articles were included in the review. In cross-sectional studies, depressive symptoms were negatively related to self-rated quality of life of people with dementia. The association between depressive symptoms and proxy-rated quality of life was less clear. Behavioural disturbances, especially agitation, appeared to be negatively related to proxy-rated quality of life. There appeared to be a negative relation between quality of life, activities of daily living and cognition, although this could not be confirmed in all studies. In longitudinal studies, depressive symptoms were negatively related and cognition was positively related to self-rated quality of life, whereas dependency and depressive symptoms were negatively related to proxy-rated quality of life. CONCLUSIONS There are only few high quality studies that investigate associations of (change in) quality of life of people with dementia living in long-term care facilities. Our results suggest that depressive symptoms and agitation are related to lower quality of life. Perspective of quality of life measurement, i.e. self- or proxy rating, may influence its associations. Longitudinal studies are needed to determine which factors are related to change in quality of life over time. This information is essential for the development of interventions that aim to improve quality of life.

Nursing staff knowledge and beliefs about pain in elderly nursing home residents with dementia

BACKGROUND Aging is known to be associated with a high prevalence (up to 80%) of persistent pain among residents of nursing homes. However, even with high pain prevalence rates, nursing home residents are at risk for undertreatment. Knowledge deficits and beliefs among nurses influence staff behaviour in pain assessment and management. OBJECTIVES To develop a psychometrically sound questionnaire and to gather information about knowledge and beliefs of nursing staff regarding various aspects of pain in elderly patients with dementia. In addition, the differences among several categories of nurses (based on educational level and work experience) with respect to beliefs about pain were investigated. METHODS Participants were 123 staff members of psychogeriatric wards in two nursing homes in the Netherlands (mean of 11.4 years of experience). Their results were compared with those of two groups of nurses, one consisting of 25 registered nurse PhD students in nursing science and the other consisting of 20 trainee pain nurse specialists. RESULTS The main findings indicate that nursing home staff respondents showed knowledge deficits about several aspects of pain, even though they were satisfied about the way pain was assessed and treated at their wards. Specific knowledge deficits were found regarding pain treatment and medication in elderly nursing home residents. Staff educational level seemed to influence their beliefs and knowledge about pain in elderly nursing home patients.

Which Score Most Likely Represents Pain on the Observational PAINAD Pain Scale for Patients with Dementia

OBJECTIVES We sought to determine a cutoff score for the observational Pain Assessment in Advanced Dementia (PAINAD), to adequately assess pain in clinical nursing home practice and research. DESIGN AND SETTING We used data from multiple sources. We performed a literature review on PAINAD, performed secondary data analysis of a study examining psychometric properties of PAINAD in nursing home patients with dementia, and performed another study in nursing home patients with dementia specifically aimed at determining a cutoff score for PAINAD. PARTICIPANTS Patients with dementia in long term care facilities. MEASUREMENTS We related PAINAD scores (range 0 to 10) to (1) self-reported and proxy-reported pain by global clinical judgment and (2) scores on another pain assessment instrument (DOLOPLUS-2), and (3) we compared scores between painful and supposedly less painful conditions. RESULTS Findings from this study showed that a cutoff value of 2 should serve as a trigger for a trial with pain treatment. Although the majority of patients scoring 1 or 0 were not in pain, pain could be ruled out. CONCLUSION Based on the findings of multiple available data sources, we recommend that a PAINAD score of 2 or more can be used as an indicator of probable pain. A score of 1 is a sign to be attentive to possible pain. Future work may focus on cutoff scores for the presence of pain and severe pain in other frequently used pain tools, and on further development of methodology to assess cutoff scores.

Daily (In)Activities of Nursing Home Residents in Their Wards: An Observation Study

OBJECTIVES Research shows that nursing home residents are largely inactive. This inactivity negatively influences physical fitness, and participation in daily activities is known to have a positive influence on physical function and quality of life. Existing research does not provide sufficient insight into the daily activities in which nursing home residents participate. This insight is needed to develop future interventions so as to encourage nursing home residents to participate in daily activities and, thereby, decrease inactivity. The purpose of this study was to obtain insight into daily (in)activities of psychogeriatric and somatic nursing home residents during the day and their body positions during these (in)activities. DESIGN Cross-sectional observation study. SETTING Nursing homes in the Netherlands (19 psychogeriatric and 11 somatic wards). PARTICIPANTS Participants were 723 home residents in 7 nursing homes. MEASUREMENTS Observations were conducted using a self-developed observation list. Residents were observed in their wards during 5 random observation times between 7:00 am and 11:00 pm, in which the daily activity and position of the resident during this activity were scored. Percentages of activities and positions were calculated for each observation time. RESULTS In total, 3282 observations (91% of the intended 3615 observations) were conducted. Nursing home residents of both psychogeriatric and somatic wards were mainly observed partaking in in activities, such as sleeping, doing nothing, and watching TV (range: 45%-77% of the 5 observation times). Furthermore, residents were engaged in activities of daily living (ADLs) (range: 15%-38%) that mainly comprised activities related to mobility (range: 10%-19%) and eating and drinking (range: 2%-17%). Engagement of residents in instrumental ADLs (IADLs) was rarely observed (up to 3%). Residents were largely observed in a lying or sitting position (range: 89%-92%). CONCLUSION Most of the psychogeriatric and somatic nursing home residents spend their day inactive in a lying or sitting position in the ward. To encourage nursing home residents in daily activities in the wards, interventions are needed that (1) focus on increasing ADLs and IADLs, and (2) encourage standing and walking.

Small-scale, homelike facilities in dementia care: A process evaluation into the experiences of family caregivers and nursing staff

BACKGROUND Current developments in institutional dementia care aim at the downsizing of facilities and increasing their homelike appearance. Small-scale living facilities are an example of this movement, in which a small group of residents (usually six to eight) live together in a homelike environment. Residents are encouraged to participate in normal daily activities and nursing staff is part of the household with integrated tasks. Despite the increase of these facilities, little is known about experiences of family caregivers of residents and nursing staff. OBJECTIVE To gain an in-depth insight into the experiences of family caregivers and nursing staff with small-scale living facilities. DESIGN A process evaluation was conducted alongside the final measurement of an effectiveness study, using a cross-sectional, descriptive design. SETTINGS Two types of institutional dementia care in the Netherlands: small-scale living facilities and regular wards in nursing homes. PARTICIPANTS In total, 130 family caregivers and 309 nursing staff workers in both care settings participated in a survey questionnaire. Additional in-depth interviews were conducted with a random selection of 24 participants in small-scale living facilities: 13 family caregivers and 11 nursing staff workers. METHODS Survey questions for family caregivers focused on care service delivery; questions for nursing staff were related to skills. The interviews especially related to positive and negative aspects of small-scale living facilities and skills for nursing staff. RESULTS Both family caregivers and staff mainly reported positive experiences with small-scale living facilities, especially the personal attention that nursing staff provides to residents, their involvement with residents and the emphasis on autonomy in daily life. Barriers mainly related to nursing staff working alone during a large part of the day. Family caregivers in small-scale living facilities were more satisfied with the care facility and nursing staff than those in regular wards. CONCLUSION The findings of the study revealed several positive aspects of small-scale living facilities related to physical, social and organizational aspects that could be used as tools to implement changes in institutional dementia care settings.

Reliability study in five languages of the translation of the pain behavioural scale Doloplus

Non‐verbal pain assessment scales are useful tools for pain evaluation in persons with communication disorders and moderate–severe dementia. The Doloplus® was one of the first scales to be developed and validated as a pain assessment tool in older adults with dementia. This study aims at evaluating the translation of the Doloplus® scale in five languages, as regards test–retest and inter‐rater reliability. Results show that both tests are good or excellent for the English, Italian, Portuguese and Spanish versions and moderate for the Dutch version. These results bring a unique opportunity to include the translated Doloplus® scale in daily assessment of elderly persons with communication disorders, and future studies should focus on enriching the validation of the scale in each language.