Dementia In Long-term Care Settings Research Articles

Care home staff interventions to optimise pain assessment and management in people with advanced dementia in long-term care settings: a systematic review

Abstract Introduction As a person’s dementia symptoms worsen, they become increasingly frail and dependent on others for support,[1] which often necessitates moving into long-term care (LTC). Pain is often poorly recognised and undertreated in people with advanced dementia.[2] Aim To identify and evaluate the effectiveness of care home staff interventions involving pain assessment and management in people with advanced dementia in LTC settings. Methods This systematic review was conducted and reported in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines and registered with the International Prospective Register of Systematic Reviews (PROSPERO; CRD42022355487). Nine databases (Medline, Scopus, The Cochrane Library, EMBASE, Web of Science, International Pharmaceutical Abstracts, PsycINFO, CINAHL, World Health Organisation International Clinical Trials Registry Platform) were searched. The search strategy was developed in Medline and adapted as appropriate for the other databases; it comprised the following search terms: ‘dementia’, ‘Alzheimer’s disease’, ‘pain assessment’, ‘pain management’, ‘pain intervention’, ‘care home’, and ‘nursing home’. The selection of studies was limited to randomised controlled trials (RCTs) in which ≥50% of participants had advanced (moderate-severe) dementia and published in English. Electronic databases were searched from date of inception to May 2023. Two reviewers independently assessed potentially relevant articles for inclusion, completed data extraction and assessed risk of bias using the Cochrane Risk of Bias (RoB) 2.0 tool. A third reviewer was consulted when consensus could not be reached. A narrative analysis was undertaken due to the heterogeneity of outcome measures. Results In total, 3504 articles were identified, with 998 records remaining after duplicate removal. This left 2456 studies for title/abstract screening, and 22 full-text studies were assessed for eligibility; five studies met the inclusion criteria. A total of 1363 participants (mean age 83-88 years) and 123 care homes were included in the studies. The studies reported that these interventions were shown to be effective compared to control groups: the Pain recognition and Treatment (PRT) protocol in China, regular use of the PACSLAC pain assessment tool in Canada, the use of a Comprehensive Observational Pain Management Protocol in Hong Kong, the COSMOS intervention in Norway, and the STA OP stepwise multidisciplinary intervention in the Netherlands. Primary outcomes concerning pain scores measured by PACSLAC (n=2 studies), PAINAD (n=2 studies), and MOBID-2 (n=1 study) showed a statistically significant decrease. Secondary outcomes measured included several clinical outcomes associated with pain, depression, presence of neuropsychiatric symptoms and nursing staff stress. Four of the included studies were judged to be at ‘some concerns of bias’ according to RoB 2.0, due to unclear information in two or more domains (randomisation process, deviations from intended interventions, and measurement of the outcomes); one study was judged as having a ‘low risk of bias’. Conclusion The use of pain assessment tools decreased pain scores in people with advanced dementia in LTC. A limitation of this review is the exclusion of non-English language studies. Further, the clinical and methodological heterogeneity of included studies made a quantitative comparison difficult, thus, the findings are based on narrative analysis.

The effects of individual music therapy in nursing home residents with dementia to improve general well-being: study protocol of a randomized controlled trial

BackgroundDementia is often associated with Neuropsychiatric Symptoms (NPS) such as agitation, depression, hallucinations, anxiety, that can cause distress for the resident with dementia in long-term care settings and can impose emotional burden on the environment. NPS are often treated with psychotropic drugs, which, however, frequently cause side effects. Alternatively, non-pharmacological interventions can improve well-being and maintain an optimal quality of life (QoL) of those living with dementia. Other QoL related outcomes, such as pain, discomfort and sleep disruption are relevant outcomes in music trials as well. Music therapy is a non-pharmacological intervention that can reduce NPS and improve well-being, and its associated symptoms in dementia.MethodsThe research will be conducted at eight nursing home facilities of a health care organization in the Netherlands. A sample size of 30 in each group (experimental and control group) is required, totalling 60 residents increased to 80 when considering expected drop out to follow up. The participants in the intervention group receive 30 min of individual music therapy (MT) in their own room by a music therapist twice a week for 12 weeks. The participants in the control group will receive 30 min of individual attention in their own room by a volunteer twice a week for 12 weeks. Assessments will be done at baseline, 6 weeks and 12 weeks. An independent observer, blinded for the intervention or control condition, will assess directly observed well-being (primary outcome) and pain (secondary outcome) before and after the sessions. Nurses will assess other secondary outcomes unblinded, i.e., perceived quality of life and NPS, both assessed with validated scales. The sleep duration will be indirectly assessed by a wrist device called MotionWatch. Information about psychotropic drug use will be derived from electronic medical chart review.DiscussionThe main purpose of this study is to assess the effects of individual music therapy on directly observed well-being controlled for individual attention in nursing home residents with dementia with NPS. The outcomes refer to both short-term and long-term effects consistent with therapeutic goals of care for a longer term. We hope to overcome limitations of previous study designs such as not blinded designs and music facilitators that were not only music therapists but also occupational therapists and nurses. This study should lead to more focused recommendations for practice and further research into non-pharmacological interventions in dementia such as music therapy.Trial registrationThe trial is registered at the International Clinical Trials Registry Platform (ICTRP) search portal in the Netherlands Trial Registration number NL7708, registration date 04-05-2019.

INITIAL FINDINGS ON THE BENEFITS OF THE TOVERTAFEL: REDUCING BEHAVIORS IN PERSONS WITH DEMENTIA

Abstract Technologies have been developed to reduce behaviors in persons with dementia by addressing unmet needs through activities that stimulate multiple senses. The Tovertafel (“magic table”) is a novel device from the Netherlands that enables purposeful play using interactive games designed to promote social, physical, and cognitive engagement in people with dementia. This study is investigating whether an intervention using the Tovertafel improves quality of life for residents with moderate to severe dementia living in long-term care communities in the Midwest. Twelve white women with an average BIM score of 6 completed the study at the initial facility. The 4-week intervention consisted of 30-minute game sessions with 2 to 6 individuals each weekday. Participants attended 2.5 sessions per week on average and displayed increased engagement during the games per facilitator reports. Direct care staff completed the Revised Memory and Behavior Problems Checklist–Nursing Home and the Apathy Evaluation Scale–10 for all participants. Data collected eight times over six consecutive weeks during the control (2 weeks) and intervention (4 weeks) periods were analyzed. After checking assumptions, paired-sample t-tests were conducted that indicated significantly fewer memory-related behaviors (p=.047) (e.g., repetitive behaviors and questions) and instances of apathy (p=.027), during the intervention period than the control. Despite reductions in depressive and disruptive behaviors, no statistically significant differences were found. Initial findings suggest that the Tovertafel could offer innovative ways to provide activities to people with moderate to severe dementia in long-term care settings, increase their quality of life, and improve interactions with staff.

PERSON-CENTERED DEMENTIA CARE IN SOUTH KOREA: AN INTEGRATIVE REVIEW

Abstract Person-centered dementia care is a globally recognized best practice; however research on this practice is lacking. In Korea, the number of people living with dementia is rapidly increasing, expanding the need for person-centered care. Thus, we reviewed published studies regarding person-centered dementia care in Korea. We searched for studies in four databases (RISS, KISS, KoreaMED, and DBpia) and selected 14 primary studies published between 2007 and 2023. Two reviewers extracted data and three reviewers analyzed the data. Search keywords included person-centered care, person-centred care, person-centered dementia care, person-centred dementia care, dementia, demented, Alzheimer, or cognitive impairment. A total of 14 articles met inclusion criteria. The primary studies were published between 2007 and 2023, and most studies were conducted in long-term care settings and targeted formal care staff. The authors’ disciplines included nursing, social welfare, humanity, and human services. Many studies did not report theory or theoretical models. Research designs included non-experimental study (8), qualitative study (4), and experimental study (2), and randomized clinical trial (1). Many studies did not report on theory or theoretical models. Most quantitative studies included variables such as personhood in dementia, person-directed care, person-centered climate, dementia knowledge, or attitude toward dementia. Most quantitative studies reported that person-centered dementia care education programs enhanced personhood in dementia in long-term care settings. The qualitative studies explored the meaning of humanitude, readiness to adapt, effective communication, or education programs related to person-centered dementia care. Future scholars should conduct experimental studies or mixed-method studies to report on theory or theoretical models.

P196: The effects of individual music therapy on well-being of nursing home residents with dementia: study protocol of a randomized controlled trial

Background:Dementia is often associated with Neuropsychiatric Symptoms (NPS) such as agitation, hallucinations, anxiety, that can cause distress for the resident with dementia in long-term care settings and can impose emotional burden on the environment. NPS are often treated with psychotropic drugs, which, however, frequently cause side effects. Alternatively, non-pharmacological interventions can improve well-being and maintain an optimal quality of life (QoL) of those living with dementia. Music therapy is a non-pharmacological intervention that can reduce NPS and improve well-being of persons with dementia.Objective:The main aim of this study is to assess the effects of individual music therapy on well-being controlled for providing individual attention in nursing home residents with dementia and NPS.Methods:The research is conducted at eight facilities of one nursing home organization in the Netherlands. The participants in the intervention group receive 30 minutes of individual music therapy (MT) in their own room by a music therapist twice a week for 12 weeks. The participants in the control group receive 30 minutes of individual attention in their own room by a volunteer twice a week for 12 weeks. Assessments will be done at baseline, 6 weeks and 12 weeks. An independent observer, blinded for the intervention or control condition, assesses directly observed well-being (primary outcome) and pain before and after the sessions. Nurses assess other secondary outcomes unblinded, i.e., perceived quality of life and NPS assessed with validated scales. The sleepy duration is will be assessed by a wrist device called MotionWatch. Information about psychotropic drug use is derived from electronic medical chart review.Results:We will present baseline data and preliminary results.Discussion:The outcomes refer to both short-term and long-term effects consistent with therapeutic goals of care for a longer term. We hope to overcome limitations of previous study designs such as non- blinded designs and pragmatic designs in which music facilitators that were not only music therapists but occupational therapists and nurses. This study should lead to more focused recommendations for practice and further research into non-pharmacological interventions in dementia.Trial registration:The trial is registered at the International Clinical Trials Registry Platform (ICTRP) search portal in the Netherlands Trial Registration number NL7708, registration date 04-05-2019.

EXPERIENCE BEYOND NARRATIVE: A PHENOMENOLOGICAL ACCOUNT OF MEANING-MAKING WHILE LIVING IN THE WORLD WITH DEMENTIA

Abstract Narrative-based approaches in dementia care emphasize the importance of understanding humans as beings who make sense of themselves and others through constructing life narratives, taking this process to be morally significant for constituting or characterizing identities (and for holding others into their identities) (Kitwood, 1997). Yet, placing too much emphasis on the formation of a cohesive life narrative risks dismissing or otherwise failing to acknowledge the activities of meaning-making and narrative-sharing/constructing that those with dementia engage outside of, or even counter to, a unified narrative. This paper offers a Heideggerian-inspired phenomenological analysis of interactions detailed in the Friendship Study (de Medeiros et al. 2011) and from supporting published accounts and personal observation in clinical settings. This account reveals significant meaning-making possibilities engaged and shared among those living with dementia in long-term care settings that may be left unexamined in traditional narrative-based approaches suggesting that micro-narrative construction needs further attention.

Validation of the Japanese version of the quality of life-Alzheimer’s disease for nursing homes

Objectives This study aims to validate the Japanese version of Quality of Life-Alzheimer’s Disease for Nursing Homes (QOL-AD NH). This is the modified version of QOL-AD, initially developed for residents living with dementia in long-term care settings. Methods Psychometric assessment was conducted in a sample of 101 residents and their professional care staff to obtain self-ratings and proxy-ratings of QOL, respectively. Residents’ behavior was observed using Dementia Care Mapping (DCM) method, and their mood/engagement (ME) value was evaluated as a proxy measure of QOL. Results Self-ratings were higher than proxy-ratings (t = 10.22, p<.001), with moderate correlation (r=.51, p<.001) and strong internal consistency (α=.87 for both). The exact agreement between the two groups was 38.23%. Convergent validity was confirmed with ME value and positive engagements of DCM. Exploratory factor analysis was performed for further validity testing. Three factors – self and life overall, social environment, and physical and psychological health, accounted for 85.9% of the total variance with Cronbach’s α of .87, .73, .90, respectively. Conclusion Using a validated Japanese version of the QOL-AD NH may help assess the QOL of older residents living in long-term care settings to improve the continuum of care for dementia.

"It Makes You Feel That You Are There": Exploring the Acceptability of Virtual Reality Nature Environments for People with Memory Loss.

Aim: To report on the acceptability of virtual reality (VR) nature environments for people with memory loss at memory cafes, and explore the experiences and perceptions of carers and staff. Methods: A qualitative study was conducted between January and March 2019. Ten adults with memory loss, eight carers and six volunteer staff were recruited from two memory cafes, located in Cornwall, UK. There were 19 VR sessions which were audio recorded and all participants were interviewed at the end of the sessions. Framework analysis was used to identify patterns and themes in the data. Results: During the VR experience, participants were engaged to varying degrees, with engagement facilitated by the researcher, and in some cases, with the help of a carer. Participants responded positively to the nature scenes, finding them soothing and evoking memories. The VR experience was positive; many felt immersed in nature and saw it as an opportunity to ‘go somewhere’. However, it was not always positive and for a few, it could be ‘strange’. Participants reflected on their experience of the VR equipment, and volunteer staff and carers also shared their perceptions of VR for people with dementia in long-term care settings. Conclusions: The VR nature experience was an opportunity for people with memory loss to be immersed in nature and offered the potential to enhance their quality of life. Future work should build on lessons learned and continue to work with people with dementia in developing and implementing VR technology in long-term care settings.

Implementing Non-Pharmacologic Interventions for People Living with Dementia in Long-Term Care Settings

Person-centered dementia care is a best practice recommendation by the Alzheimer’s Association, and non-pharmacologic interventions that emphasize well-being and quality of life as defined by the individual are important to preserve personhood. Non-pharmacologic, person-centered interventions have been shown to effectively address various neuropsychiatric symptoms, commonly known as behavioral and psychological symptoms in dementia (BPSD), which include a wide range of behaviors such as verbal or physical aggression, agitation, wandering, and pacing. Interventions that are focused on an individual’s holistic needs and preferences can stimulate positive emotions and behavior regardless of the stage of dementia. Person-centered care emphasizes a social model of care, rather than a medical model, by focusing on an individual’s emotional needs and care preferences that are consistent with their previous lifestyle. This symposium explores four different non-pharmacologic interventions for individuals living with dementia and discusses challenges and best practices for implementation in long-term care settings. For example, a best practice includes “buy-in” from facility staff who ultimately are responsible for implementing interventions that follow a social care model. A challenge found includes creating consistency and adherence to non-pharmacologic interventions so they are sustained over time, potentially replacing additional doses of medication. Symposium presenters will discuss the Mason Music & Memory Initiative (M3I), the Alzheimer’s Poetry Project, Birdsong, and TimeSlips, which are all interventions that are relatively low-cost and easy to implement by non-specialists. Strategies for intergenerational programming and adaptability of these programs to different contexts will also be discussed.

Nutrition and hydration for people living with dementia near the end of life: A qualitative systematic review.

AimsTo synthesize the qualitative evidence of the views and experiences of people living with dementia, family carers, and practitioners on practice related to nutrition and hydration of people living with dementia who are nearing end of life.DesignSystematic review and narrative synthesis of qualitative studies.Data sourcesMEDLINE, Embase, PsycINFO, CINAHL.Review methodsDatabases were searched for qualitative studies from January 2000‐February 2020. Quantitative studies, or studies reporting on biological mechanisms, assessments, scales or diagnostic tools were excluded. Results were synthesized using a narrative synthesis approach with thematic analysis.ResultsTwenty studies were included; 15 explored the views of practitioners working with people living with dementia in long‐term care settings or in hospitals. Four themes were developed: challenges of supporting nutrition and hydration; balancing the views of all parties involved with ‘the right thing to do’; national context and sociocultural influences; and strategies to support nutrition and hydration near the end of life in dementia.ConclusionThe complexity of supporting nutrition and hydration near the end of life for someone living with dementia relates to national context, lack of knowledge, and limited planning while the person can communicate.ImpactThis review summarizes practitioners and families’ experiences and highlights the need to include people living with dementia in studies to help understand their views and preferences about nutrition and hydration near the end of life; and those of their families supporting them in the community. The review findings are relevant to multidisciplinary teams who can learn from strategies to help with nutrition and hydration decisions and support.

Formal caregivers’ perceptions and experiences of using pet robots for persons living with dementia in long‐term care: A meta‐ethnography

To explore the formal caregivers' perceptions and experiences of using pet robots for persons living with dementia residing in long-term care settings and the factors influencing their perceptions by evaluating, integrating, and synthesizing findings from relevant international research articles using a meta-ethnography. Noblit and Hare's interpretative meta-ethnography. Eight articles, published between 2013-2018, were identified following a systematic search of four databases (Scopus, ProQuest Central, EBSCO, and Google Scholar) between June 2019-February 2020. Two researchers independently appraised the selected articles. Noblit and Hare's seven steps and a meta-ethnography reporting guidance were used. Reciprocal translation was used to obtain a line of argument synthesis. Three overarching themes were identified: a beneficial tool but not for everybody, a tool that has limitations but could be overcome, and a positive experience if appropriately introduced and sustained. This meta-ethnography contributes to the understanding of current potential benefits and limitations of pet robots for persons living with dementia residing in long-term settings. It also identifies several factors, as perceived by caregivers, that may influence their acceptability, adoption, and routine use in practice. Although for the past two decades pet robots have been used as a psychosocial intervention for persons living with dementia in long-term care settings, there is a dearth of literature on the perception of formal caregivers and their experience of such interventions. While pet robots can have emotional, social, behavioural, and practical benefits, there are several technological, organizational, and contextual challenges and limitations that constrain their routine use. The solutions synthesized in this review can be of benefit to robot designers, facility managers, policy makers, and other health care professionals interested in introducing pet robots in long-term care settings.

NURSING ASSISTANTS’ OPINIONS ON CREATING THE PERFECT DINING EXPERIENCE FOR RESIDENTS WITH DEMENTIA

Feeding residents with dementia in long-term care settings can be challenging, partly related to environmental factors. Certified Nursing Assistants (CNAs) are primarily responsible for feeding residents with dementia who need assistance. Given that older adults with dementia have an increased risk of developing malnutrition, there is a need to develop standards in place for constructing an ideal dining environment to optimize residents’ dietary intake. This qualitative study was conducted to explore CNA’s perspectives of how dining areas could be enhanced to improve food intake of residents with dementia. Nine focus groups were conducted with a total of 53 CNAs who had at least one year of experience feeding residents. Focus groups were audio recorded and transcribed verbatim. Data were analyzed using directed content analysis guided by the Social Ecological Model. CNAs reported that distractions can significantly inhibit residents’ food intake; therefore, limiting distractions such as noise and crowding is important. CNAs also reported the benefit of playing music in the dining area depended on the individual resident. Additionally, CNAs emphasized the importance of offering a variety of appetizing menu choices tailored to residents’ preferences. CNAs have firsthand experience with residents with dementia and can provide valuable insights. Long-term care administration should consider interdisciplinary support to improve the mealtime experience of residents with dementia in an effort to enhance their dietary intake. In particular, providing a variety of menu choices in a well-lit, calm, spacious, and homelike dining environment can be beneficial.

Factors related to Use of Physical Restraints for Older Adults with Dementia in Long-term Care Settings

Purpose: The purpose of this study was to investigate factors related to use of restraints for older adults with dementia in long-term care settings. Methods: This study analyzed secondary data from the Nationwide Survey on Dementia Care in Korea (NaSDeCK). Demographic characteristics, disease characteristics, and functional characteristics were analyzed. Data were analyzed with x2 test, t-test, ANOVA, and logistic regression analysis. Results: Among participants, 8.2% experienced use of restraints. ‘Strap’ (78.3%) was the most commonly used restraint and ‘Behavioral problem’ (51.3%) was a major reason for the restraint. Persons who have low levels of daily activity and cognition deficits, higher levels of dependence, histories of falls within the past 3 months, and living in long-term hospitals have greater probability of restraint experience. Conclusion: Developing interventions for older adults who have a high risk of being restrained is essential to minimize unnecessary restraint use among older adults with dementia in long-term care settings. Further study exploring the interacting roles of organizational and staff factors related to use of physical restraints would provide more comprehensive perspectives in understanding this phenomenon.

Giving permission to care for people with dementia in residential homes: learning from a realist synthesis of hearing-related communication

BackgroundManaging hearing communication for residents living with hearing loss and dementia in long-term care settings is challenging. This paper explores how care can be effective in optimising hearing communication for residents living with dementia. We argue that the underlying notion of permission or authorisation allows care staff to do what they know will be effective in providing person-centred care that enhances hearing communication. The paper also indicates that this notion of permission can usefully be applied to other areas of care home practice.MethodsTo address hearing-related communication in care homes, we conducted a realist synthesis (RS). As a theory-driven approach to reviewing literature, it also uses expert opinion to understand complex health situations. Using RS, we developed a theory surrounding the management of hearing-related communication in care homes. Applying formal processes to the literature search and data extraction, the analysis uncovered relevant mechanisms and contexts to help confirm, refute or refine our understanding of how hearing communication could be improved.ResultsForty-three papers were selected for the realist synthesis. The documents were analysed to construct five context-mechanism-outcome configurations (CMOCs). The CMOCs represent possible care interventions to optimise hearing-related communication in care homes for person living with dementia and hearing loss (PLWDHL). They include leadership promoting positive regard and empathy through person-centred care, communication training for staff, ‘knowing the person’ and relationship building for responsive awareness of residents’ hearing needs, maintaining and monitoring hearing communication through care planning, and managing noise in the care home environment.ConclusionsLeadership that provides appropriate training and resources is likely to enhance knowledge and skills, leading to staff feeling able and equipped to respond to the hearing-related communication needs of PLWDHL. Collaboration with local hearing services is likely to raise awareness of hearing loss among care home staff. Importantly, care staff require a sense of permission from leadership, to work with knowledge and autonomy in the interest of residents living with dementia and hearing loss.

The Influence of the Physical Environment on Residents With Dementia in Long-Term Care Settings: A Review of the Empirical Literature.

The physical environment in long-term care facilities has an important role in the care of residents with dementia. This paper presents a literature review focusing on recent empirical research in this area and situates the research with therapeutic goals related to the physical environment. A comprehensive literature search was conducted in Ageline, PsychINFO, CINAHL, Medline and Google Scholar databases to identify relevant articles. A narrative approach was used to review the literature. A total of 103 full-text items were reviewed, including 94 empirical studies and 9 reviews. There is substantial evidence on the influence of unit size, spatial layout, homelike character, sensory stimulation, and environmental characteristics of social spaces on residents' behaviors and well-being in care facilities. However, research in this area is primarily cross-sectional and based on relatively small and homogenous samples. Given the increasing body of empirical evidence, greater recognition is warranted for creating physical environments appropriate and responsive to residents' cognitive abilities and functioning. Future research needs to place greater emphasis on environmental intervention-based studies, diverse sample populations, inclusion of residents in different stages and with multiple types of dementia, and on longitudinal study design.

Nursing home manager's knowledge, attitudes and beliefs about advance care planning for people with dementia in long-term care settings: a cross-sectional survey.

To examine nursing home managers' knowledge, attitudes, beliefs and current practice regarding advance care planning for people with dementia in long-term care settings informed by the theory of planned behaviour. Internationally, advance care planning is advocated for people with dementia. However, evidence suggests that discussions with people with dementia are rare, particularly in long-term care settings. Whilst nursing home managers can be considered central to implementation in this setting, there is a dearth of research that has examined their perspective. This study reports on their role with regard to advance care planning and the perceived factors which influence this. A cross-sectional postal survey was carried out as part of a larger scale sequential explanatory mixed-methods study between January-March 2015. Nursing home managers in a region in the UK (n=178). A response rate of 66% (n=116) was achieved. Nursing home managers demonstrated a lack of knowledge of advance care planning, with negative attitudes underpinned by concerns regarding the capacity and lack of perceived benefits to the person with dementia. Currently, they do not view advance care planning as part of their role, with lack of ownership impacting upon current practice behaviours. Whilst nursing home managers recognise the potential benefits of advance care planning, barriers and challenges create a reluctance to facilitate. Targeted training to address the knowledge deficit is required, with the wider components of advance care planning promoted. There is a need for greater role clarification to ensure nurses in long-term care settings identify with the process in the future. A gap between rhetoric and reality of implementation is evident; therefore, long-term care settings must critically examine system, organisational and individual factors for failure to implement advance care planning for people with dementia. Increased cognisance of the context in which advance care planning takes place is vital for improved implementation in this context. In addition strong nursing leadership is imperative to facilitate initiation, engagement and re-evaluation of the process of advance care planning.

Measures to assess commonly experienced symptoms for people with dementia in long-term care settings: a systematic review.

BackgroundHigh symptom burden is common in long-term care residents with dementia and results in distress and behavioral challenges if undetected. Physicians may have limited time to regularly examine all residents, particularly those unable to self-report, and may rely on reports from caregivers who are frequently in a good position to detect symptoms quickly. We aimed to identify proxy-completed assessment measures of symptoms experienced by people with dementia, and critically appraise the psychometric properties and applicability for use in long-term care settings by caregivers.MethodsWe searched Medline, EMBASE, PsycINFO, CINAHL and ASSIA from inception to 23 June 2015, supplemented by citation and reference searches. The search strategy used a combination of terms: dementia OR long-term care AND assessment AND symptoms (e.g. pain). Studies were included if they evaluated psychometric properties of proxy-completed symptom assessment measures for people with dementia in any setting or those of mixed cognitive abilities residing in long-term care settings. Measures were included if they did not require clinical training, and used proxy-observed behaviors to support assessment in verbally compromised people with dementia. Data were extracted on study setting and sample, measurement properties and psychometric properties. Measures were independently evaluated by two investigators using quality criteria for measurement properties, and evaluated for clinical applicability in long-term settings.ResultsOf the 19,942 studies identified, 40 studies evaluating 32 measures assessing pain (n = 12), oral health (n = 2), multiple neuropsychiatric symptoms (n = 2), depression (n = 8), anxiety (n = 2), psychological wellbeing (n = 4), and discomfort (n = 2) were included. The majority of studies (31/40) were conducted in long-term care settings although none of the neuropsychiatric or anxiety measures were validated in this setting. The pain assessments, PAINAD and PACSLAC had the strongest psychometric evidence. The oral health, discomfort, and three psychological wellbeing measures were validated in this setting but require further psychometric evaluation. Depression measures were poor at detecting depression in this population. All measures require further investigation into agreement, responsiveness and interpretability.ConclusionsMeasures for pain are best developed for this population and setting. All other measures require further validation. A multi-symptom measure to support comprehensive assessment and monitoring in this population is required.Electronic supplementary materialThe online version of this article (doi:10.1186/s12916-016-0582-x) contains supplementary material, which is available to authorized users.

Volunteers adding life in dementia (valid): A volunteer-led intervention to reduce behavioral symptoms of dementia in long-term care settings

Volunteers adding life in dementia (valid): A volunteer-led intervention to reduce behavioral symptoms of dementia in long-term care settings

Care staff and family member perspectives on quality of life in people with very severe dementia in long-term care: a cross-sectional study.

BackgroundLittle is known about the quality of life of people with very severe dementia in long-term care settings, and more information is needed about the properties of quality of life measures aimed at this group. In this study we explored the profiles of quality of life generated through proxy ratings by care staff and family members using the Quality of Life in Late-stage Dementia (QUALID) scale, examined factors associated with these ratings, and further investigated the psychometric properties of the QUALID.MethodsProxy ratings of quality of life using the QUALID were obtained for 105 residents with very severe dementia, categorised as meeting criteria for Functional Assessment Staging (FAST) stages 6 or 7, from members of care staff (n = 105) and family members (n = 73). A range of resident and staff factors were also assessed.ResultsCare staff and family member ratings were similar but were associated with different factors. Care staff ratings were significantly predicted by resident mood and awareness/responsiveness. Family member ratings were significantly predicted by use of antipsychotic medication. Factor analysis of QUALID scores suggested a two-factor solution for both care staff ratings and family member ratings.ConclusionsThe findings offer novel evidence about predictors of care staff proxy ratings of quality of life and demonstrate that commonly-assessed resident variables explain little of the variability in family members’ proxy ratings. The findings provide further information about the psychometric properties of the QUALID, and support the applicability of the QUALID as a means of examining quality of life in very severe dementia.

Impact of the design of the built environment on people with dementia: an evidence-based review.

In this review the impact of the design of the built environment on people with dementia in long-term care settings is systematically analyzed and summarized. Architects and designers will be provided with credible evidence on which they can confidently base their design decisions. Researchers will be able to determine which environmental aspects have been well investigated and where there are gaps in the current state of the research. A great number of studies have established a relationship between the design of the physical environment of long-term care settings and outcomes of people with dementia. However, the methods employed are heterogeneous and the results are often conflicting. Consequently, the process of integrating the best evidence available into architectural designs may be hindered. A systematic literature search was conducted reviewing studies that meet certain inclusion criteria. Using an evidence-based approach, the methodical quality of the studies was rated. One hundred sixty-nine studies were found. They were thematically summarized into four main categories: basic design decisions, environmental attributes, ambience, and environmental information. The effectiveness of the interventions on the behavior, cognition, function, well being, social abilities, orientation, and care outcomes on people with dementia was illustrated by matrices. Results of this review indicate that, with the exception of cognition, specific design interventions are beneficial to the outcomes of people with dementia. Overall, the field of environmental design for people with dementia is well researched in many aspects and only few gaps in knowledge were identified.