Characteristics and value of 'meaningful activity' for people living with dementia in residential aged care facilities: "You're still part of the world, not just existing".

Most residential aged care facilities support residents to participate in activities and the importance of activities that are suited to individual preferences and abilities is widely acknowledged. Participating in activities, including those considered to be 'meaningful' has the potential to improve residents' quality of life. However, what makes activities meaningful for people living with dementia in residential aged care facilities is unclear. The aim of this study was to understand the key characteristics of 'meaningful activity' in residential aged care facilities and the perceived value of residents participating in these activities. Using a qualitative study design, this study explored 'meaningful activities' from the perspectives of people living with dementia in residential aged care facilities, their family members and staff. Across four residential aged care facilities, residents (n = 19) and family members (n = 17) participated in individual interviews while staff (n = 15) participated in focus group interviews. Interviews were recorded, transcribed and analysed using a qualitative content analysis approach. Participant responses suggest that the meaning of an activity is subjective, varying over time and between individuals. Key characteristics of an activity that makes it meaningful include being enjoyable, social and engaging, aligning with the persons' interests, preferences, and abilities. To be considered meaningful, activities need to do more than occupy the person. The activity needs to be linked to a personally relevant goal and an aspect of the individuals' identity. Participating in 'meaningful activities' was perceived as valuable to encourage participation and socialising, provide a sense of normality for residents and improve their wellbeing. The findings of this study further our understanding of the concept of 'meaningful activity' for people living with dementia in residential aged care facilities. Understanding the key attributes of 'meaningful activity' can also provide practical guidance for those supporting people with dementia to participate in these types of activities.

Hospital nurses' management of agitation in older cognitively impaired patients: do they recognise pain-related agitation?

BACKGROUND: cognitively impaired hospital patients often experience agitation and aggression due to pain. Agitation complicates care, increasing the risk of adverse outcomes and patient-to-nurse violence. Managing agitation is challenging for nurses. Literature suggests they may rely on antipsychotics while missing other more appropriately targeted treatments. However, nurses' management of agitation remains unclear and under-researched. OBJECTIVE: the aim of this study was to investigate hospital nurses' management of agitation in older cognitively impaired patients with pain. DESIGN: this was a descriptive correlational study using virtual simulation. SETTING AND PARTICIPANTS: a total of 274 registered medical and surgical nurses from 10 public hospitals in Queensland, Australia participated in the study. METHODS: nurses undertook a virtual simulation requiring them to manage agitation in a patient with dementia and an injury. Nurses also completed a post-simulation questionnaire. Their simulation performances were correlated with demographics such as seniority, workplace, training, experience and gerontology-specific knowledge. Constructed from an original, validated vignette, the simulation included branching pathways, video scenarios and an avatar that could converse with participants. RESULTS: thirteen nurses (4.7%) recognised and treated the virtual patient's agitation as pain-related. Most nurses (89%) gave antipsychotics of which 207 (78%) gave these first-line and 102 (38%) used them twice. Independent of other variables, nurses most likely to diagnose pain were dementia-unit nurses (OR = 8.7), surgical-unit nurses (OR = 7.3) and senior nurses (OR = 5). CONCLUSIONS: hospital nurses predominately managed agitation with antipsychotics, a decision that most made after undertaking inadequate patient assessments. This confirmed a common gap in practice that may lead to the missing of pain in the clinical care of agitated patients with dementia and/or delirium.

The role of experiential knowledge in hospital nurses' management of pain-related agitation in people with dementia: An expert performance simulation study.

BACKGROUND: Pain-related agitation in hospital patients with dementia presents a diagnostic challenge as patients often cannot explain their agitation. Generally, a deductive process is required of staff, culminating in an analgesic trial. However, evidence suggests the deductions of hospital nurses may be flawed because they may not associate agitation in dementia with painful conditions, thereby missing key clinical cues. While analytical rule-based deduction applies explicit formal knowledge, cognitive scientists argue that tacit experiential knowledge, i.e., the unconscious classification of available cues, is equally important and is always involved. AIM: To identify the cognitive characteristics unique to nurses who accurately recognise pain-related agitation in a patient with dementia compared with nurses who do not. METHODS: In this descriptive multivariate study, registered acute-care nurses undertook an original computerised virtual simulation requiring them to identify and manage pain-related agitation in a standardised patient with dementia. Process tracing methods captured nurses' simulation performances alongside their retrospective accounts of thinking. These were correlated with demographic characteristics related to seniority, workplace, training, experience and knowledge captured on a questionnaire. Dual processing theory enabled interpretation of intuitive and analytical cognitive processes. FINDINGS: Registered medical and surgical nurses (N = 274) participated from 10 hospitals. Although formal knowledge about pain in dementia was high (88%), only 13(4.7%) nurses identified pain-related agitation from an injury. These individuals took the longest and used the most cues, undertaking a detailed deductive search. Their recognition of pain-related cues demonstrated accurate experiential knowledge while another 16 nurses identified a fracture without linking the injury to agitation. Over three quarters (78%) of nurses decided on initial antipsychotic treatment. They were quick to decide, using the fewest cues, suggesting agitation was recognised as typical and familiar, with the solution well-known (albeit ineffective). Independent of other variables, nurses working in dementia-specific units, surgical units or with more seniority had increased odds of recognising pain, revealing the influence of workplace experience. However, most surgical and dementia-unit nurses did not recognise pain. CONCLUSIONS: Hospital nurses have difficulty recognising when agitation in a patient with dementia is caused by pain. High formal knowledge about pain in dementia may not be sufficient to enable clinical recognition of pain in patients. Instead, nurses with experience in specific workplaces or senior roles may be better equipped to recognise pain-related agitation and deploy evidence-based approaches for agitation in a patient with dementia. Overall, these results lend support to the influence of experiential knowledge on performance. TWEETABLE ABSTRACT: In a virtual simulation, registered nurses with high formal knowledge about pain in dementia lacked the experience required to recognise pain-related agitation in a patient with dementia.

Pilot Study of the Residential Care Transition Module to Support Australian Spouses of People with Dementia.

OBJECTIVES: Spouses are at risk of poor psychosocial outcomes following placement of their partner with dementia into long-term care. The Residential Care Transition Module (RCTM) is a psychosocial intervention developed in the United States to support carers post-placement. This study aimed to test the RCTM delivered by telephone to Australian spousal carers. METHODS: A small-scale RCT [N = 21] was conducted to test feasibility of recruitment, retention, acceptability, and preliminary effects on measures of stress, grief, depression, guilt, quality-of-life, and satisfaction with care, compared to a group receiving printed information. RESULTS: The Transition Counselor and study participants considered the intervention delivery, dose, and content as acceptable. Retention was high (91%). At follow-up, significant time effects were found for stress, depression and "nursing home hassles." A significant interaction effect was found for quality-of-life in favor of the comparison group. No effects were found for guilt or overall grief, however a promising result regarding the sub-scale of "acceptance of loss" was found in favor of the RCTM. CONCLUSIONS: The delivery of the RCTM to Australian spousal carers was feasible and acceptable. CLINICAL IMPLICATIONS: The RCTM shows potential for improving support to spouses of people with dementia following long-term care placement.

Long-term care placement: The transitional support needs and preferences of spousal dementia caregivers.

BACKGROUND AND OBJECTIVES: Many spousal caregivers experience stress, depression, loneliness, guilt and grief when placing a partner with dementia into long-term care. However, there is little research about their transitional support experiences, needs and preferences. This study aimed to gain a deeper understanding of these issues from spousal caregiver and long-term care facility staff perspectives, to inform subsequent support and intervention development. RESEARCH DESIGN AND METHODS: Semi-structured interviews and small group discussions were held separately with spousal caregivers (n = 9) and care facility staff (n = 11). Criterion and variation sampling aimed to ensure a range of experiences and perspectives. The 'Framework' approach was utilised for data analysis. Interpretation was with respect to underpinning models of stress-grief process in dementia caregiving. FINDINGS: A range of informational, psychoeducational and psychosocial supports were identified to help spousal caregivers cope better with the stressors and losses experienced throughout the transition from home to long-term care. Improved education about disease progression, information relating to long-term care provision, peer support and dementia-specific grief counselling were deemed important. Opportunities for better support within care facilities were also identified. Support should be tailored to individual needs and preferences. DISCUSSION AND IMPLICATIONS: The findings suggest a supportive care framework be developed, encompassing the trajectory from assessment for and admission into long-term care to end-of-life and post-bereavement support. Spousal caregivers should have their support needs assessed by trained health or social care professionals and be offered a range of support options as appropriate.

Advocating the rights of people with dementia to contribute to research: Considerations for researchers and ethics committees.

OBJECTIVE: Research involving people with dementia is vital to appropriately inform policy and practice decisions affecting this population. As dementia-care researchers, we frequently advocate to Human Research Ethics Committees for the right of people with dementia to choose whether to participate in research. This brief report provides some considerations for researchers and ethics committees. METHOD: Descriptive summary of principles that argue for inclusion of people with dementia in research studies. RESULTS: Specifically excluding people living with dementia from research because of perceived cognitive impairment is inappropriate in light of human rights principles and the right to contribute to evidence-based care. CONCLUSIONS: There is a difference between capacity to provide informed consent and ability to provide perspectives that are valid for each individual. Providing the opportunity for a person with dementia to participate in research and offering support to do this is a matter of human rights.

Rethinking respite in Australia: A naturalistic effect study of a multicomponent community program to promote respite knowledge, attitudes and behaviours of carers of people with dementia.

'Rethink Respite' was a prospective, naturalistic cohort study conducted in the Illawarra-Shoalhaven (NSW, Australia) to improve knowledge, attitudes and uptake of respite strategies in carers of people with dementia. A convenience sample of n = 70 carers were recruited in 2014-15 to establish a baseline for knowledge, attitudes and use of respite for a cohort of carers in the region. Carer perceived need for respite, burden and self-efficacy were also assessed. A co-designed multi-component community-based intervention was subsequently rolled at in the region from 2015 to 2016. The intervention supported: awareness raising media; carer education sessions; access to web and print respite information resources; and an option to participate in a tailored one-on-one in-home coaching program. At program completion, a follow-up survey was administered to the cohort, with n = 44/70 responding. All n = 44 respondents reported participation in and exposure to 'Rethink Respite' media, information and education during the intervention period. Eighteen of the 44 also self-selected to receive the active tailored coaching support. At follow-up, few positive results were reported on the assessed carer variables for the cohort over time. However, post hoc sub-group analyses found those who also self-selected to receive active support (provided through coaching) (n = 18), showed improvements to their respite knowledge, attitudes and self-efficacy (p < .05). Intention to use respite, and levels of personal gain from caring in this sub-group also increased (p < .05). In contrast, carers who only participated in the informational/educational aspects of the program (and did not self-select to the respite coaching), experienced negative changes over time to their respite beliefs and 'role captivity'. Overall, this pilot study suggests that passive respite information and educational strategies are insufficient, without more active supports (tailored respite coaching) to address observed carer decline over time. Future research should seek to replicate these results using a larger sample and an experimental design.

"Would you like to join me for a walk?" The feasibility of a supervised walking programme for people with dementia who wander.

AIMS AND OBJECTIVES: Five of the eight focus areas of Bowen's Feasibility Framework were utilised to assess the feasibility of implementing the Safe Walking Program (SWP) with people with severe dementia who wander in long-term care (LTC). BACKGROUND: Dementia-related wandering in LTC is associated with adverse outcomes related to intensity (malnutrition, exhaustion and pain, injury) and type of walking (sleep deprivation, resident violence and elopement, death). There is little evidence guiding best practice for managing wandering in LTC. DESIGN: The SWP involved a three-week trial of taking residents (n = 7) for a 30-min supervised walk, 30 min before individual peak walking activity periods (PWAP), outside the care facility. Quantitative (real-time observation and 24/7 Actigraph™ data: not reported here) and qualitative data were collected pre-, during and postintervention. METHODS: Feasibility to implement the SWP protocol was evaluated using a protocol fidelity checklist completed at the end of each scheduled intervention. Acceptability and sustainability of the programme were evaluated through staff interviews. RESULTS: Eighty per cent of scheduled walks commenced and were completed, with 91% of walks lasting the full 30 min. Care staff reported benefits for participants and care staff. The perceived sustainability of the SWP in the LTC setting was impacted by the strict timing of the walk to coincide with participant's individual PWAP. The use of care staff to lead some scheduled walks was seen as interfering with care routines. CONCLUSIONS: To enhance the acceptability/sustainability of the SWP in LTC, further testing of the importance of dose and timing is required. Consideration needs to be given to suggested modifications to the protocol. IMPLICATIONS FOR PRACTICE: The SWP is an acceptable and enjoyable activity for people with severe dementia who wander. Utilising walking tracks around the neighbourhood was perceived as being an important element of the programme.

A national survey of aged care facility managers' views of preparedness for natural disasters relevant to residents with dementia.

OBJECTIVE: The aim was to explore the natural disaster preparedness strategies of Australian residential aged care facilities (RACFs), focussing on aspects relevant to people with dementia. METHODS: An online survey was sent to 2617 RACF managers, with 416 responding. Questions included the following: (a) demographics; (b) presence and detail level of disaster/evacuation plans; and (c) references to people with dementia. RESULTS: One in four facilities had experienced a natural disaster in the previous five years. The majority had plans for natural disaster and evacuation. Two-thirds recognised the unique needs of people with dementia. Managers anticipated that residents with dementia would require more staff time and resources and might become disoriented. CONCLUSIONS: Gaps identified in existing RACF evacuation plans highlighted challenges in ensuring the ongoing safety and care of residents, especially those with dementia. Facilities need to have adequate plans and processes that minimise the potential risks of natural disasters.

Effectiveness of psychosocial interventions on the psychological health and emotional well-being of family carers of people with dementia following residential care placement: a systematic review.

OBJECTIVE: To identify, appraise and synthesize existing evidence regarding the effectiveness of psychosocial interventions on the psychological health and emotional well-being of family carers of people with dementia who have moved into residential care. INTRODUCTION: Many carers experience stress, guilt, grief and depression following placement of a relative with dementia into residential care. Psychosocial interventions to support family carers may help to improve psychological health and emotional well-being; however, evidence for such interventions delivered to family carers following placement has yet to be appraised and synthesized. INCLUSION CRITERIA: Participant criteria included any family carers of people with dementia who have moved into residential or nursing or long term care. Interventions were included if they were designed to improve the psychological health and emotional well-being of family carers post-placement. Comparators included no intervention, other non-pharmacological intervention or standard/usual care. Outcomes included carer burden, anxiety, stress, depression, guilt, grief and loss, quality of life, or satisfaction with care of the person with dementia. METHODS: Key databases (PubMed, CINAHL, PsycINFO) and trials registries (Cochrane, WHO Clinical Trials, UK Clinical Trials) were searched to identify both published and unpublished studies in English from 1990 to 2017. The recommended Joanna Briggs Institute approach to critical appraisal, study selection, data extraction and data synthesis was followed. Data from studies was pooled in statistical meta-analysis where possible, and presented in narrative and tabular form otherwise. RESULTS: Four studies were eligible for inclusion. Two studies were randomized controlled trials (RCTs) of individualized multicomponent interventions, and two were cluster RCTs of group multicomponent interventions. Interventions were mostly underpinned by stress appraisal and coping theories. Outcomes measured, measurement tools and length of follow-up varied between the studies. There was high risk of selection, attrition and detection bias.A total of 302 family carers were included. For the individualized interventions, significant improvements were reported for carer guilt (F = 5.00; p = 0.03), role overload (F = 5.00; p = 0.04) and distress (F = 6.13; p = 0.02), but no significant effect was found for satisfaction with the residential care facility. Meta-analyses indicated there was no overall effect at three to four months post-intervention on carer burden (weighted mean difference 2.38; 95% CI -7.72 to 12.48), and depression (weighted mean difference 2.17; 95% CI -5.07 to 9.40). For the group interventions, no significant effects on carer distress were found; however, significant improvements in carer "heartfelt sadness" at three months post-baseline (F = 5.04; p = 0.027) and guilt at six months (F = 4.93; p = 0.029) were reported in one study. CONCLUSIONS: Individualized multicomponent psychosocial interventions following residential care placement may be beneficial in improving family carers' role overload, psychological distress and guilt. Group interventions may also improve feelings of guilt and sadness. There is insufficient evidence that individualized or group interventions improve carer depression, burden or satisfaction. However, due to substantial heterogeneity between studies and methodological flaws, the grade of this evidence is very low.Further high quality RCTs that include different groups of carers are recommended. Comparative effects of individualized versus group interventions should be examined as these are likely to have cost implications.

Recruitment of Individuals With Dementia and Their Carers for Social Research: Lessons Learned From Nine Studies.

Many health and social care research studies report difficulties recruiting sufficient numbers of participants, adding to time and money expenditures and potentially jeopardizing the generalizability of findings. The current article reports the effectiveness and resource requirements of recruitment strategies used in nine dementia-related studies conducted in Australia. Articles, notices, or advertisements in targeted specialist newsletters were the most cost-effective method of recruitment. The use of service providers to aid recruitment yielded mixed results, but was lengthy in terms of research time. Online and social media were low cost but not reliably effective in terms of recruitment potential. Despite using multiple strategies to maximize recruitment, significant challenges were encountered achieving the required sample sizes; in most cases these challenges resulted in delays in the recruitment phase. Implications for researchers in the fields of dementia and general social/health research are discussed. [Res Gerontol Nurs. 2018; 11(3):119-128.].

A cross-sectional examination of the prevalence of psychotropic medications for people living with dementia in Australian long-term care facilities: issues of concern.

ABSTRACTBackground:Behavioral and psychological symptoms of dementia (BPSD) are a common problem in long-term care facilities (LTC). Clinical guidelines dictate that first-line treatments for BPSD are psychosocial and behavioral interventions; if these are unsuccessful, psychotropic medications may be trialed at low doses and their effects can be monitored. METHODS: There have previously been no studies with nationally representative samples to investigate psychotropic administration in LTCs in Australia. This study determines the prevalence of psychotropic administration in a representative stratified random sample of 446 residents living with dementia from 53 Australian LTCs. Questionnaire and medical chart data in this study is drawn from a larger cross-sectional, mixed methods study on quality of life in Australian LTCs. RESULTS: It was found that 257 (58%) residents were prescribed psychotropic medications including: antipsychotics (n = 160, 36%), benzodiazepines (n = 136, 31%), antidepressants (n = 117, 26%), and anti-dementia medications (n = 9, 2%). BPSD were found to be very common in the sample, with 82% (n = 364) of participants experiencing at least one BPSD. The most prevalent BPSD were depression (n = 286, 70%) and agitation (n = 299, 67%). CONCLUSIONS: Although detailed background information was not collected on individual cases, the prevalence found is indicative of systematic industry-wide, over-prescription of psychotropic medications as a first-line treatment for BPSD. This study highlights a clear need for further research and interventions in this area.

Effectiveness of psychosocial interventions on the psychological health and wellbeing of family carers of people with dementia following residential care placement: a systematic review protocol.

REVIEW QUESTION/OBJECTIVE: The objective of this review is to identify, appraise and synthesize existing evidence regarding the effectiveness of psychosocial interventions on the psychological health and emotional wellbeing of family carers of people with dementia who have moved into residential care.More specifically, the objectives are to determine the effectiveness of psychosocial interventions on any of these family carer outcomes after placement in residential care: burden, anxiety, stress, depression, guilt, grief and loss, quality of life and satisfaction with the care of the person with dementia.

Experiences of family-staff relationships in the care of people with dementia in residential aged care: a qualitative systematic review protocol.

REVIEW QUESTION/OBJECTIVE: The objective of this systematic review is to identify, critically appraise and synthesize the best available literature regarding experiences and perceptions of family-staff relationships in the care of people with dementia living in residential aged care facilities.More specifically, the objectives are to identify family caregiver and healthcare staff experiences and perceptions of their own and each other's roles and responsibilities and the characteristics that facilitate or hinder a constructive family-staff relationship.

Observing wandering-related boundary transgression in people with severe dementia.

OBJECTIVES: Wandering-related boundary transgression (BT) in long term care (LTC) frequently manifests as intrusion into another resident's bedroom and is associated with adverse outcomes (loss of privacy, resident-to-resident altercations, and becoming lost). This observational study is the first to empirically describe the characteristics of wandering-related BT in LTC residents with severe dementia. METHOD: Using real-time observation, seven independently ambulant residents with severe dementia and a positive history of wandering and BT were observed for a minimum of twelve 30 minute periods randomized over two non-consecutive days (n=92 observation periods). Frequency and duration of locomoting/non-locomoting phases and BT (entry into out of bounds/private space), patterns of ambulation (direct, random, pacing, and lapping), and activities observed during BT were measured during observation periods. RESULTS: Across 431 locomoting phases, 58 (13%) resulted in a BT and the bedroom of another resident was most frequently (86%) involved. BT was statistically associated with random ambulation and peak activity periods, and was observed more often in those with more frequent ambulation. Most BT events were unwitnessed by others and occurred when the participant was alone. CONCLUSIONS: Describing BT has increased understanding of when, where, and how BT occurs and provides background for future intervention research.

Effectiveness of meaningful occupation interventions for people living with dementia in residential aged care: a systematic review.

BACKGROUND: The ability to participate in valued activities, whether for work, leisure or family, is an important aspect of personal identity. In dementia, progressive memory loss means that abilities developed over a lifetime begin to be lost as well, contributing to the loss of self and identity. Some studies have reported that activities or interventions tailored to be meaningful to the person with dementia (defined as any activity important to the individual) are more effective in addressing behavioral and psychological symptoms of dementia (BPSD) and improving quality of life (QoL) than those that are not so tailored. However, the effectiveness of individualizing interventions or activities for this population is not known. OBJECTIVES: In response to consumer feedback by the Consumer Dementia Research Network that this question ought to be addressed, this review was undertaken, the aim of which was to determine the effectiveness of meaningful occupation interventions for people living with dementia in residential aged care facilities (RACFs). INCLUSION CRITERIA: People living with dementia in RACFs (nursing homes).Any intervention that was individualized to be meaningful to the participant, versus any active control condition or usual care.Experimental and observational studies. TYPES OF OUTCOMES: Quality of life, BPSD (such as agitation, aggression, depression, wandering and apathy), mood, function, cognition and sleep. SEARCH STRATEGY: The search strategy aimed to identify both published and unpublished studies, with the following 12 databases extensively searched: PubMed, CINAHL, PsycINFO, ISI Web of Science, OTSeeker, Embase, Cochrane CENTRAL, clinicaltrials.gov, Mednar, OpenSIGLE, New York Academy of Medicine Library Gray Literature Report, ProQuest Dissertations and Theses. The search strategy was limited to papers published in English between 2004 and January 31, 2015. METHODOLOGICAL QUALITY: All studies were assessed independently by two reviewers for relevance, eligibility and methodological quality. DATA EXTRACTION: Data from included papers were extracted using a standard data extraction tool. DATA SYNTHESIS: Where possible, study results were pooled in statistical meta-analysis. Alternatively, results are presented in narrative and tabular form. RESULTS: A total of 5274 citations were identified; after removal of duplicates, assessment for relevance and eligibility, 61 studies underwent critical appraisal. Thirty-four studies met the quality criteria and were included in a quantitative synthesis. A wide range of interventions were evaluated including individualized recreational activities (13 studies), reminiscence therapy (RT) (seven studies), music therapy interventions (six studies), training staff to develop individual care plans using person-centered care (PCC) or similar approaches (three studies), animal-assisted therapy (two studies), multi-sensory interventions (MSIs) (two studies) and social interaction (one study), all of which measured a number of different outcomes. Overall, and in spite of most studies being small-scale and of relatively brief duration, all interventions with the exception of Snoezelen therapy (a MSI) reported some benefits for people with dementia living in RACFs. The most frequently reported benefits were reductions in agitation (the most frequently assessed outcome), passivity and depression, improved QoL and increases in pleasure and interest. However, the majority of studies generally implemented the intervention, whether it was individualized activities, music or RT or other, in conjunction with one-to-one social interaction, and the relative importance of the intervention in comparison to one-to-one social contact for effectiveness cannot be determined from this review. CONCLUSION: Providing meaningful or individualized tailored activities for people with dementia living in RACFs appears to be effective for a range of behavioral and psychological symptoms. The strongest evidence was for individualized activities/recreational interventions for a range of BPSD; preferred music for agitation, depression and anxiety; and RT for mood and cognitive functioning. Insufficient evidence precluded making recommendations regarding animal-assisted (dog) therapy and training staff to develop individual care plans using PCC or similar approaches, while there was no good quality evidence to show that Snoezelen was effective for any outcome. What remains unclear, however, is whether any of these interventions is more effective than the provision of one-to-one social interaction.

Achieving a National Sample of Nursing Homes: Balancing Probability Techniques and Practicalities.

Sampling design is critical to the quality of quantitative research, yet it does not always receive appropriate attention in nursing research. The current article details how balancing probability techniques with practical considerations produced a representative sample of Australian nursing homes (NHs). Budgetary, logistical, and statistical constraints were managed by excluding some NHs (e.g., those too difficult to access) from the sampling frame; a stratified, random sampling methodology yielded a final sample of 53 NHs from a population of 2,774. In testing the adequacy of representation of the study population, chi-square tests for goodness of fit generated nonsignificant results for distribution by distance from major city and type of organization. A significant result for state/territory was expected and easily corrected for by the application of weights. The current article provides recommendations for conducting high-quality, probability-based samples and stresses the importance of testing the representativeness of achieved samples.

Effectiveness of interventions to improve family-staff relationships in the care of people with dementia in residential aged care: a systematic review protocol.

REVIEW QUESTION/OBJECTIVE: The objective of this review is to identify and appraise existing evidence regarding the effectiveness of interventions designed to enhance staff-family relationships for people with dementia living in residential aged care facilities.More specifically, the objectives are to identify the effectiveness of constructive communication, cooperation programs, and practices or strategies to enhance family-staff relationships. The effectiveness of these interventions will be measured by comparing the intervention to no intervention, comparing one intervention with another, or comparing pre- and post-interventions.Specifically the review question is: What are the most effective interventions for improving communication and cooperation to enhance family-staff relationships in residential aged care facilities? BACKGROUND: In our aging world, dementia is prevalent and is a serious health concern affecting approximately 35.6 million people worldwide. This figure is expected to increase two-fold by 2030 and three-fold by 2050. Although younger-onset dementia is increasingly recognized, dementia is most commonly a disease that affects the elderly. Among those aged 65 to 85, the prevalence of dementia increases exponentially, and doubles with every five-year increase in age.Dementia is defined as a syndrome, commonly chronic or progressive in nature, and caused by a range of brain disorders that affect memory, thinking and the ability to perform activities of daily living. While the rate of progression and manifestation of decline differs, all cases of dementia share a similar trajectory of decline. The progressive decline in cognitive functions and ultimately physical function that these people face affects not only the person with the disease but also their family caregivers and health care staff.The manifestation of dementia presents unique and extreme challenges for the family caregiver. Generally it causes great physical, emotional and social strain because the caregiving process is long in duration, unfamiliar, unpredictable and ambiguous. In the later stages of dementia, many family caregivers relocate their relative to a residential aged care facility, most often when the burden of care outweighs the means of the caregiver. This is especially likely when the person with dementia ages, and has lower cognitive function increased limitations in activities in daily living and poorer self-related health. As a result, approximately 50% of all persons aged 65 years or over admitted into residential aged care facilities have dementia.The relocation of a relative into a residential aged care facility can be complex and distressing for family caregivers. While relocation alleviates many issues for the family caregiver, it does not consequently reduce their stress. The stress experienced by the family caregivers who remain involved post-relocation often continues and may even worsen. This is because family caregivers are uncertain about how to transition from a direct caregiving role to a more indirect, supportive interpersonal role, and may be provided with little support from care staff in this regard. Although family caregivers experience a new form of stress post-relocation, family involvement in residential aged care settings has been shown to be beneficial to residents with dementia, their families and care staff.Family involvement is widely acknowledged to provide the resident physical and emotional healing, optimal well-being, and the sustainment of quality of life. Family caregivers benefit from improved satisfaction with the facility and experiences of care, and greater well-being. Care staff benefit from enhanced job satisfaction and greater motivation to remain in their job. The key to these positive outcomes is effective communication and strong relationships between care staff and family caregivers.Effective communication between care staff and family caregivers is crucial for residents with dementia. This is because residents with cognitive impairment may have difficulties articulating their needs, concerns and preferences effectively. Family caregivers rely on staff for information about their relative's behavior in the residential aged care facility; however they themselves have in-depth information about the resident's physical, psychosocial and emotional histories that are necessary for developing individualized care support plans. Family involvement can support care staff in reducing residents' behavioral symptoms by assisting to identify social and emotional needs, or unmet medical needs. Ineffective communication from family caregivers in conveying information to care staff may be disruptive in the caregiving process, and may lead to disagreement regarding respective roles and approaches to caring for the resident. Consequently, family caregivers may withhold information that may support care staff and improve care. They may also be concerned about negative repercussions for the resident.Care staff and family caregivers generally have differing needs and expectations. Care staff are usually in the position where they have to manage a relationship with the family, which is based on multiple roles. Perceptions of family caregivers by care staff include seeing them as colleagues, subordinates, or people who themselves may be in need of nursing care. These different perceptions lead to role ambiguity and result in separate approaches to the caregiving process.Cohen et al. suggest in their study that family involvement can benefit people with dementia in residential aged care settings, their family carers and staff; however further research is required. The relationship between care staff and family caregivers is often challenging due to problems with communication, role ambiguity of both care staff and family carers, and differing approaches to caring for the resident. These problems highlight the need for interventions to constructively enhance the quality of family-staff relationships. For example, one intervention called Partners and Caregiving has been reported as being designed to increase cooperation and effective communication between staff and family. In this study, staff and family members were randomly subjected to treatment and control conditions. The treatment group received parallel training sessions on communication and conflict resolution techniques, followed by a joint meeting with the facility administrators. The results of the study demonstrated improved outcomes in the form of improved attitudes of staff and family members towards each other, less conflict between family and staff, and fewer intentions of staff to quit. Further research is vital in order to identify effective family-staff intervention studies that can provide directions for implementation in residential aged care facilities. Furthermore, it is equally important to identify interventions that are ineffective, so as to provide insights into potential pitfalls to avoid in order to improve staff and family members' relationships and the provision of care to people living with dementia in the future.Previous systematic reviews have focused on factors associated with constructive family-staff relationships in caring for older adults in the institutional setting and the family's involvement in decision making for people with dementia in residential aged care facilites. This review will however specifically investigate interventions for improving communication and cooperation that promote effective family-staff relationships when caring for people with dementia living in residential aged care facilities.