Host family respite: description and assessment of a program

Objective: To describe the characteristics of the Host Family Respite Program and its value within the community, and to discuss some of the issues associated with the use of respite care services. Method: The study includes a retrospective analysis of the characteristics of 97 families and 33 host family carers taking part in the program between 1998 and 2002. Benefits associated with the program were assessed through information provided by 31 primary carers. Results: Most care recipients suffered from some form of dementia (93%). Host family carers were primarily women aged 50–59 years. Primary carers described feeling worried, stressed and exhausted prior to using the service, but reported a high degree of satisfaction after their break. Conclusion: The Host Family Respite Program represents an alternative service that can make a significant impact on and improvement in the quality of life of older people with dementia living in the community, and their carers.     

Polish Carers,Their Dependents and Respite Care Services

A study of Polish carers, their dependents and respite care services was conducted by the Australian Polish Community Services with funding from the Commonwealth Respite for Carers program. Thirty care-givers and their dependents were interviewed in the western suburbs of Melbourne. It was found that some of the carers were elderly and suffered from a range of health problems themselves. Their dependents suffered from stroke-related illnesses, heart attacks and dementia. Most carers who cared for dependents with dementia reported suffering from tiredness, sleeplessness and depression. Most carers were using some sort of support services but were unfamiliar with the concept of respite care. It is hoped that the results of this study will alert mainstream service providers to the needs of Polish care-givers and their dependents.     

Study protocol: A Montessori approach to dementia-related,non-residential respite services in Australia

Given the social burden and significant cost of dementia care in Australia, finding evidence-based approaches that improve outcomes, maintain independence, and reduce the impact on patients and families is essential. Finding effective ways to train and assist the healthcare staff who support these individuals is also critical, as they are considered to be at risk of workplace stress, burnout, and other psychological disturbances which negatively affects standards of care. The current paper describes a protocol for evaluating the effects of a Montessori-based approach to dementia care, in non-residential respite centres. An 18 month prospective observational, cohort controlled design is suggested that will compare participants from a community respite service that has undergone a Montessori-based workplace culture change and those from a service that provides a person-centred ‘care as usual’ approach. To achieve this, the protocol includes the assessment of participants across multiple variables on a monthly basis including the cognitive, behavioural, and emotional functioning of clients with dementia, levels of caregiver burden experienced by informal carers, and burnout, compassion satisfaction and workplace engagement among respite staff. The protocol also employs a qualitative evaluation of program fidelity. This approach will provide further insight into the potential benefits of early intervention with Montessori approaches for persons living with dementia in the community, their caregivers, and the staff and volunteers who assist them.     

Key stakeholders’ experiences of respite services for people with dementia and their perspectives on respite service development: a qualitative systematic review

Background

Respite services provide a break in the caregiving relationship for people with dementia and their carers, however they are often under-used and service acceptability can be low. This study aims to understand key stakeholders’ experiences of respite services for people with dementia, with a view to informing respite service development.

Methods

A systematic search was conducted of the Pubmed/MedLine, Embase, Cinahl, PsychInfo, Scopus, Web of Science, and Cochrane databases (1980–2016, English) with fixed search terms relating to ‘respite’ and ‘dementia’, following PRISMA guidelines. Noblit and Hare’s approach to meta-ethnography was employed. Key concepts were identified across the papers and reciprocal and refutational translation techniques were applied to primary studies; findings were synthesized into third order interpretations and finally, a ‘line-of-argument’ was developed.

Results

In total 23 papers were reviewed, which described 20 independent samples across 12 countries. The views of 889 participants were synthesized (13 people with dementia, 690 carers, 44 ‘service providers’, 52 frontline staff, 70 managers, 12 volunteers, six academic/policy-makers, and two independent consultants). Five key concepts were identified and outlined i.e. 1) the transition to service use 2) expanding organizational capacity 3) dementia care quality 4) building a collaborative care partnership and 5) dyad restoration. There was broad agreement around the key areas for service development across the range of stakeholders (flexible and responsive person-centred care, meaningful activity for people with dementia, enhanced client-service communication and informational support). However, there was clear divergence in stakeholder perspectives around the barriers to implementation of such developments. Organizational tension was evident between frontline staff and management in respite services, hindering the cultural change necessary to facilitate service development in line with dyad’s needs and preferences.

Conclusion

Respite services must surmount internal organizational barriers to change, and cultivate a collaborative solution-focused care culture, which acknowledges the centrality of the dyad and their care preferences. Future research should explore the development of alternative/modified community respite service models, which have greater capacity to be responsive to the needs of each individual dyad. The perspectives of people with dementia must be included in research in this area going forward.

Trial registration

PROSPERO Registration Number: CRD42016050191.

     

Multiple views reveal the complexity of dementia diagnosis

Objective: To reveal views about dementia diagnosis derived from a larger study of information needs of carers of people with dementia in Tasmania, Australia. Methods: Over 100 participants, including family carers, health professionals and dementia service personnel, met as discrete focus groups. Data pertinent to dementia diagnosis were segregated and subjected to across‐group comparative analysis. Results: The term dementia held connotations of stigma and futility, despite stated benefits of having a diagnosis. General practitioners were regarded as pivotal but having inadequate diagnostic and treatment options. While most health professionals advocated a longitudinal diagnostic process, this created considerable stress for family carers who sought a speedy process. Without a diagnosis, some dementia‐specific services were undeliverable. Conclusion: Dementia diagnosis is steeped in deep‐rooted difficulties and stressful implications, compounded by carers’ differing needs and interests. Better understanding between care providers of their conflicting and consistent views could contribute to better dementia care.     

Respite: carers experiences and perceptions of respite at home

ABSTRACT: BACKGROUND: Informal carers play an important role in supporting people with long-term conditions living at home. However, the caring role is known to have adverse effects on carers such as poorer emotional health and social isolation. A variety of types of respite may be offered to carers but little is known about the benefits of respite, carers' experiences with it, or their perceptions of care workers. This study therefore investigated these experiences and perceptions. METHOD: Recorded, semi-structured interviews were undertaken with twelve carers receiving weekly four-hourly respite. Carers were either caring for a person over sixty or were over sixty themselves. Interviews were analysed thematically. Results and Discussion Respite sometimes alleviated carers' constant sense of responsibility for their cared for. Trust, whether in the service provider or individual care workers, was essential. Carers lacking this trust tended to perceive respite as less beneficial. Low expectations were common with carers often unwilling to find fault. Care workers were frequently seen as very kind with some carers valuing their company. Care workers who were flexible, communicated well and responded to the cared for's needs were valued. Stimulation of the cared for during respite was very important to most carers but the perceived benefits for carers were often very individual. Many carers used respite to catch up with routine, domestic tasks, rarely using it to socialise. CONCLUSIONS: For many carers, respite was a way of maintaining normality in often difficult, restricted lives. Respite allowed continuation of what most people take for granted. Carers frequently viewed respite as intended to improve their cared for's quality of life, rather than their own. This centrality of the cared for means that carers can only really benefit from respite if the cared for is happy and also seen to benefit. Future research should investigate the perspectives of carers and their cared for, focussing on different demographic groups by features such as age, gender, ethnic and diagnostic groups. However, without greater clarity about what respite is intended to achieve, clear evidence of a positive impact of this intervention may remain difficult to identify.     

Person-centred dementia services are feasible, but can they be sustained?

BACKGROUND: we evaluated a specialist community-based dementia service to establish whether high quality care was being delivered and the conditions for doing so. The service was in an urban part of Rushcliffe Primary Care Trust, Nottinghamshire, United Kingdom. The service comprised an assessment team of an occupational therapist, a community psychiatric nurse and a community care officer, supported by 235 h per week of care delivered by a team of specially trained community care workers. METHODS: a qualitative study was performed using non-participant observation, semi-structured interviews and focus groups, and analysed using a thematic framework approach. There were 2 focus groups involving staff, 11 interviews of staff and stakeholders, and interviews of 15 carers of people with dementia. RESULTS: the care provided was appreciated by carers, and the service was approved by staff and stakeholders. Care was delivered using a rehabilitative style that aimed to maintain personhood, rather than to promote independence. Clients were usually referred with the object of preventing unwanted admission to institutional care but, over time, moving into an institution ceased to be a uniformly undesirable outcome. The service's resources were reduced during the evaluation period, in part to meet mental health needs in intermediate care services. CONCLUSIONS: an appropriately resourced and constructed specialist service using an adaptive rehabilitation approach aimed at maintaining personhood can deliver good individualised care to people with dementia, but specific and appropriate commissioning for these services is needed to nurture them.     

An Exploratory Study of Carers' and Care Staff's Perspectives of Silver Memories—A Unique Radio Program for Older People

The aim of this evaluation was to ascertain the perspectives of both carers of older people and residential care staff regarding the impact of a new radio program, Silver Memories, on the behavior and well-being of older listeners, as well as their opinions regarding the program's quality and appeal. Silver Memories is a unique radio service designed for the older listener that broadcasts music and programs from the 1920s to the 1950s. The program first aired in Brisbane, Australia, in April 2008. Nine carers of older people and 15 care staff from 11 residential aged care facilities in which Silver Memories had been introduced for a 3-month trial period were interviewed to obtain their views regarding the quality of the program and its impact on older listeners. The majority of respondents thought that listening to Silver Memories positively influenced the well-being, morale, and behavior of older listeners very much or greatly. Relaxation was the most frequently reported benefit and older listeners with dementia appeared to receive the greatest benefit. The friendliness and quality of the program were also rated highly. It was concluded that old-time music and programs such as those broadcast by Silver Memories appear to be beneficial for older people.     

Caregiver activity on respite and nonrespite days: a comparison of two service approaches.

Use of time was examined among female caregivers of dementia patients who used home care (n = 20) and day care (n = 20) respite services. Assessment of caregiver activity during respite and nonrespite days revealed significant program differences in the amount of caregiving time and overall differences in the amount of noncaregiving time. Use of respite time was also examined. Significant predictors of willingness to continue care were identified. Ratings of program satisfaction were very high.     

Freiwillige Helferinnen und Helfer zur Entlastung der Angehörigen demenzkranker Menschen

Caring for a dementia patient in the family often turns out to be a full-time job for family carers. So home visitors-for example volunteers spending time with the patient and thus offering some respite to the family-may be a very important aspect of stabilizing home care. This study investigates the expectations of volunteers concerning their training and their future voluntary work, as well as their visiting experiences, and their reasons for stopping the voluntary work. A total of 40 volunteers were interviewed three times over a 18 month period. The interviews were based on interview guidelines and were problem-centered. The interviewees' replies were subject to a summarizing qualitative content analysis. Of the study participants 85% were women, 48% had previously been family carers themselves, and 50% had previous experience of other voluntary work. Their wish "to do something useful" and "to learn more about dementia" were the main reasons for participation in voluntary work. The interviewed persons tend to learn most about communicating with dementia patients through case studies and practical exercises. Work pressures or restarting employment were the most common reasons to stop the voluntary work. Only if the volunteers are supported by professionals--particularly in the form of a contact person who is always available when problems occur--can this type of respite for family carers be maintained.     

The Use of Nursing Homes and Hostels for Respite Care

Objective: To examine the use of respite care in nursing homes and hostels and the destinations of respite residents on completion of their respite stay. Method: Administrative by-product data on admissions and separations from nursing homes and hostels are analysed to show the length and pattern of stay of respite residents. Results: The data show that utilisation rate of approved respite beds is relatively low: 69% for hostels in 1994–95 and 50% for nursing homes. This is in spite of government subsidies available for respite care. Many respite residents become permanent residents. Thirty percent of hostel residents in 1992–93 and 42% of nursing home residents in 1993–94 became permanent residents after their first respite admission. Conclusion: The transfer from respite to permanency may be caused by changes in personal circumstances of respite residents and their carers after respite admission. But it may also indicate an inappropriate use of respite beds. The reasons behind the considerable proportion of residents moving to permanent care and the low level of use of respite beds are worth further study.     

Effect of institutional respite care on the sleep of people with dementia and their primary caregivers

OBJECTIVES: To evaluate the sleep–wake patterns of community‐dwelling patients with dementia and their primary caregivers before, during, and after 2‐week periods of institutional respite care. DESIGN: Prospective case series. SETTING: Four community hospital units in East Midlands, United Kingdom. PARTICIPANTS: Thirty‐nine patients meeting Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, criteria for dementia and caregivers completed baseline assessments; 33 of these dyads completed the full protocol. INTERVENTION: A 2‐week period of institutional respite care during which patients were admitted to community hospitals (and received routine care) while caregivers remained at home. MEASUREMENTS: For patients and caregivers, primary sleep outcomes were derived from 6 weeks of continuous wrist actigraphy (2 weeks baseline; 2 weeks respite; 2 weeks follow‐up) using the Actiwatch system. For caregivers, actigraphic measures were augmented with assessments of quality of life (using the Medical Outcomes Study 36‐item Short Form survey) and quality of sleep (using the Pittsburgh Sleep Quality Index) at baseline and by daily sleep diaries and weekly Epworth Sleepiness Scale ratings throughout the study. RESULTS: At baseline, caregivers and patients showed profiles of clinically significant sleep disturbance. For caregivers, respite periods were associated with significant (P<.05) increases in total sleep time per night, total time in bed per night, and improvements in subjective sleep quality. The benefits of respite were most evident for caregivers who did not share a bedroom with the patient. For patients, respite was associated with significant (P<.05) increases in sleep onset latency, reductions in total sleep time per night, and weakening of the circadian activity rhythm. All measures shifted in the direction of baseline levels at follow‐up. CONCLUSION: Dementia caregivers show a profile of sleep disturbance consistent with adjustment insomnia, with sleep disturbances partially reversed during periods of institutional respite care. Nevertheless, for patients, respite care worsens already disturbed sleep patterns. To optimize benefits for caregivers and patients, respite care should target sleep management.     

Capacity and coercion: dilemmas in the discharge of older people with dementia from general hospital settings

Discharge planning of older people with dementia can present difficult ethical dilemmas to the general hospital clinician. These difficulties may be particularly pronounced for those who are moderately severely affected and for whom hazards are anticipated on discharge home. In many cases the wishes of the individual to return home may differ markedly from those of health care professionals, carers or relatives. In order to reduce these tensions and preserve the choice of the individual as far as possible, we try to put into context a number of different issues. We discuss some of the misconceptions regarding the legal powers available in these situations, the limited and sometimes confusing issue of capacity and the role of Community Mental Health Teams in preserving autonomy and independence of older people with dementia in their own homes.     

Reducing preventable harm to residents in aged care: A systems approach

Residents in Australian aged care facilities can suffer serious preventable harm from incidents (‘adverse events’ (AEs)). An inadequate response to AEs by aged care facilities can compound distress to residents and their families/carers. Facilities have an obligation to respond to and investigate AEs involving residents, learn from them, and take action to reduce the chance of them reoccurring . Residential aged care facilities have a duty to create a culture where staff, residents and families/carers feel comfortable reporting AEs or complaints; there is adequate time and resources to manage AEs and complaints; and feedback is provided to staff, residents and their families/carers on the results of investigations into AEs/complaints. The Aged Care Quality and Safety Commission's role should encompass additional governance functions such as sharing results and lessons learnt from AEs, complaints and investigations across Australia, assuring the quality of investigations conducted by facilities, and undertaking national system‐wide investigations.     

Dementia Care Staff and Family Carers: Their Relationships in the Context of Care

Objectives: This research examines relationships between care staff specifically employed to care for residents with dementia and family carers. Method: The study employed a qualitative approach involving multiple methods of data collection (in-depth interviews, participant observation, assessment of the physical and mental function of residents). A non-random sample consisting of fifteen care staff from seven residential care settings was used. Results: Care staff perceive that family carers are generally grateful and undemanding and that a significant number lack sufficient involvement in residents' care. Policy and organisational factors may produce positive understanding between care staff and family carers, while at a less visible level, may prevent both groups from voicing more difficult concerns related to care. Conclusions: Policy and organisational change is needed to enable staff and family carers to voice the tensions inherent in their relationship. Funding arrangements for residential care need to include time for staff to develop relationships with family carers.     

Staff Perceptions of Communication Difficulty among Nursing Home Residents

Hearing and vision impairment are prevalent among older people in long-term care, contributing to their communication difficulties. Data on 44,012 nursing home residents were obtained with the Resident Classification Instrument, a rating scale designed to determine each resident's need for nursing and personal care, and hence entitlement to Federal funding. Comparison with related studies suggests that nursing home staff in Australia underestimate the contribution hearing loss makes to the communication difficulties of the residents in their care. An alternative approach to the assessment of the communication needs of residents is recommended to permit a more accurate assessment of needs.     

A multimedia intervention to support family caregivers

The lack of choice and predominance of crisis-oriented care in relation to respite and long-term care for family carers and frail older people provided the authors with the rationale for the development, within the European-funded Assisting Carers using Telematic Interventions to meet Older person's Needs (ACTION) project, of two innovative multimedia programs. The key aim of the programs is to provide education, information, and support about respite care and planning for the future for family carers and frail older people in their homes. In this way, it is intended that family carers and frail older people will be able to make informed choices concerning their health and social care needs. The authors describe the conceptual basis of the multimedia programs, the research and development process, the content of the multimedia programs, and the evaluation of the developed product.     

Promoting mental health in rural elders: a pilot program

Objective: This paper reports on the development and trial of a mental health promotion program for older people in rural north‐east Victoria entitled Healthy & Wise. The objective of the program was to increase mental health literacy among older adults referred to Aged Psychiatry who were not diagnosed with a psychiatric disorder but who were experiencing difficulties in dealing with the stresses of later life. A further objective of the program was to assist older adults develop skills in adapting to these stresses. Method: Delivery of the program was in a small‐group format. Evaluation utilised both quantitative and qualitative assessment of outcomes. In this report the focus is on assessment based on the Geriatric Depression Scale self‐administered to participants before the program began, post program, and at a 6‐month follow‐up. Results: There was a significant reduction in GDS score over time (pre/post) which was maintained at follow up. The program was successful in attracting participants experiencing a number of risk factors associated with poorer mental health (e.g. chronic illness). Conclusion: Adoption of Healthy & Wise, a trialed and evaluated community mental health program for older adults, could extend the delivery of mental health services in rural areas in an economic and effective way. At a time when smaller rural communities are ageing more rapidly than Australia as a whole, and funding constraints continue, it is recommended as a valuable addition to current programming. Because the study does not include a control group and because participants self selected for the program, generalisation to other populations and settings needs to be cautious. However, because of the success of this trial, it is recommended that the program be tested with other populations. Target groups might include hostel residents and carers of people with dementia.     

Care staff attitudes and experiences of working with older people with dementia

Aim: To determine care staff attitudes to dementia, assess levels of job satisfaction and explore how these attitudes and experience may relate to each other. Methods: Forty‐nine staff from four long‐term care facilities were surveyed using the Approaches to Dementia Questionnaire and the Staff Experience of Working with Demented Residents Questionnaire. Results: Attitudes were positive, focusing most on ‘person‐centred’ care (4.35) as opposed to ‘hopefulness’ (3.66). Job satisfaction was also good, being highest in terms of ‘resident contact’ (2.92) but lowest for work ‘environment’ (2.12). Care staff attitudes to dementia were positively correlated with job satisfaction (r= 0.366, n= 48, P= 0.011), particularly for attitudes focused on ‘person‐centred’ care (r= 0.393, n= 48, P= 0.006). Conclusions: Findings suggest an important relationship between care staff attitudes and levels of job satisfaction. More work is needed to specify this relationship.