A post-diagnosis information and support programme for dyads-People living with dementia or mild cognitive impairment and family carers: A feasibility study.

AIM: The aim of the study was to establish the feasibility of delivering a structured post-diagnosis information and support program to dyads (persons living with dementia or mild cognitive impairment and family carers) in two primary care settings. DESIGN: A two-phase explanatory mixed-method approach guided by the Bowen Feasibility Framework focused on acceptability, implementation, adaptation, integration and efficacy of a five-part programme. In phase 1, the quantitative impact of the programme on the dyadic programme recipients' self-efficacy, quality of life, dyadic relationship and volume of care was measured. In phase 2, inductive content analysis focused on nurse and dyad participant experiences of the programme. Quantitative and qualitative data were reviewed to conclude each element of feasibility. METHODS: Four registered nurses working within the participating sites were recruited, trained as programme facilitators and supported to deliver the programme. Eligible dyads attending the respective primary health clinics were invited to participate in the programme and complete surveys at three time points: recruitment, post-programme and 3-month follow-up. Post-programme semi-structured interviews were conducted with dyads and programme facilitators. RESULTS: Twenty-nine dyads completed the program; the majority were spousal dyads. The programme proved acceptable to the dyads with high retention and completion rates. Implementation and integration of the programme into usual practice were attributed to the motivation and capacity of the nurses as programme facilitators. Regarding programme efficacy, most dyads reported they were better prepared for the future and shared the plans they developed during the programme with family members. CONCLUSION: Implementing a structured information and support programme is feasible, but sustainability requires further adaptation or increased staff resources to maintain programme fidelity. Future research should consider selecting efficacy measures sensitive to the unique needs of people living with dementia and increasing follow-up time to 6 months. IMPACT: This study established the feasibility of registered nurses delivering a post-diagnosis information and support programme for people living with early-stage dementia or mild cognitive impairment and their informal carers in primary care settings. The motivation and capacity of nurses working as programme facilitators ensured the integration of the programme into usual work, but this was not considered sustainable over time. Family carer dyads reported tangible outcomes and gained confidence in sharing their diagnosis with family and friends and asking for assistance. Findings from this study can be used to provide direction for a clinical trial investigating the effectiveness of the structured information and support programme in the primary care setting. REPORTING METHOD: The authors have adhered to the EQUATOR STROBE Statement. PATIENT OR PUBLIC CONTRIBUTION: A public hospital memory clinic and general medical practice participated in project design, study protocol development and supported implementation.

Feasibility of a two-part person-centred care initiative for people living with dementia in acute hospitals: A mixed methods study.

Background: The personal profile offers a potentially useful tool to support person-centred care of people living with dementia in hospital. To date, how profiles can be implemented into nurses' work practices is not established. Objectives: The aim is to establish the feasibility of a Person-Centred Care package, including a personal profile and staff education program to enhance implementation. Design: Exploratory convergent mixed methods approach. Settings: Four units of a tertiary health service, two intervention units and two comparison units set in southeast Queensland, Australia. Participants: Person living with dementia and family carer dyads and staff. Methods: Practicality was determined using participation logs, audit and review of meeting minutes. Acceptability was determined using interviews with family carers and nursing staff. Efficacy was evaluated using pre-post comparison survey design, assessing staff knowledge using the Dementia Knowledge Assessment Scale and person-centred care using the Person-centredness of Older People with cognitive impairment in Acute Care-revised scale. Results: Practically, the personal profile was distributed to 95 and 73% of patients in the two intervention units. Of the 18 people living with dementia who consented to participate, only 6 (33%) had a This is Me form completed. The three-part education program was well attended (n = 190 participants). In terms of acceptability, carers' (n = 5) experienced variable quality of engagement from nurses. In interviews, nurses (n = 18) experienced increased confidence to engage carers, in part attributed to local leadership, but attitudes towards care appeared to be influenced by perceived time constraints. For efficacy, completion of both surveys at all time points and in all units was 50% and higher. Dementia knowledge significantly improved in the intervention group (p < .01) however there was no difference in self-ratings of person-centred care. Conclusions: The feasibility of a Person-Centred Care package, including a personal profile and a focused program of staff education was partially achieved, with the education component adopted into the organisation's continuing education program. Implementation research is required to enhance the element of coherence, how completing the personal profile is an investment in person-centred care rather than simply completing another form.

Interventions to prevent in-hospital falls in older people with cognitive impairment for further research: A mixed studies review.

BACKGROUND: While advances in falls prevention in the adult population have occurred, the care requirements for older patients with cognitive impairment at risk of falling are less established. OBJECTIVES: To identify interventions to prevent in-hospital falls in older patients with cognitive impairment for further research and describe the strategies used to implement those interventions. DESIGN: A seven-stage mixed studies review was used. METHODS: Seven electronic databases were searched. The SPIDER framework guided the review question and selection of search terms. The Mixed Methods Assessment Tool was used to appraise the quality of research studies, and the Quality Improvement Minimum Quality Data Set was used to appraise the quality of quality improvement projects. A convergent qualitative synthesis was used to analyse the extracted data. The adapted PRISMA guideline informed the procedures. RESULTS: Ten projects (five quality improvements and five researches) were included. Five themes emerged from the synthesis: engaging with families in falls prevention, assessing falls risk to identify interventions, extending nursing observation through technology, conducting a medication review and initiating nonpharmacological delirium prevention interventions. Implementation was not well described and commonly focused on capital investment to initiate a falls prevention programme and education to introduce staff to the new techniques for practice. CONCLUSIONS: Emerging research and quality improvement studies demonstrate that effective falls prevention with this vulnerable population is possible but requires further investigation before widespread practice recommendations can be made. Further research and quality improvement in this area should consider adoption of an implementation framework to address sustainability. RELEVANCE TO CLINICAL PRACTICE: Reducing falls in older people with cognitive impairment requires nurses to work more closely with pharmacists, occupational therapists and social workers to develop strategies that work and are sustainable.

The impact of early-stage dementia on community-dwelling care recipient/carer dyads' capacity to self-manage.

AIMS AND OBJECTIVES: To explore the impact of early-stage dementia on care recipient/carer dyads' confidence or belief in their capacity to manage the behavioural and functional changes associated with dementia and to access appropriate support networks. BACKGROUND: Living with dementia has predominantly been explored from the carer perspective and focused on the stress and burden of supporting a person with dementia. There has been a shift towards a more positive discourse to accommodate the role of self-efficacy in supporting self-management by people living with dementia. However, little has been reported on the dyadic experience of self-efficacy in managing life with dementia. DESIGN: A qualitative study using an interpretive descriptive approach. Semi-structured interviews were conducted with 13 dyads in the early stages of dementia. The collected data underwent a process of thematic analysis. The study followed the COnsolidated criteria for REporting Qualitative research (COREQ) checklist. RESULTS: Dyadic adjustment to dementia was dynamic, involving shifts between loss and adaptation. Threats to self-efficacy, declining autonomy and stigma, were significant causes of concern for both members of the dyad. Dyadic self-efficacy was demonstrated through recognition of and adaptation to dementia-related changes and development of coping strategies to integrate impairment into everyday life. CONCLUSIONS: Solution-focused approaches that improve knowledge and skills enable the dyad to adjust. The considerable impact of stigma on self-efficacy indicates that supportive disclosure strategies developed in mental health may also have a role to play in dementia interventions. RELEVANCE TO CLINICAL PRACTICE: Nurses play a significant role in advising and supporting care recipient/carer dyads with dementia, and a better understanding of the dyadic perspective provides them with essential information to support self-management. A proactive approach including information and support, offered at the beginning of the condition/care trajectory, may have the potential to delay progression into more dependent stages.

The impact of early psychosocial intervention on self-efficacy of care recipient/carer dyads living with early-stage dementia-A mixed-methods study.

AIM: To evaluate the effect of a targeted community-based psychosocial intervention on self-efficacy outcomes for care recipient/carer dyads living with early-stage dementia. BACKGROUND: There is increasing interest in the role of self-efficacy and self-management structures in determining positive outcomes for people with dementia. The assumption is that care recipient/carer dyads who receive early support to identify and adjust to dementia-related changes will cope better in the long term. DESIGN: An explanatory sequential mixed-method design was employed. Primarily quantitative with qualitative data providing a supportive secondary role to expand on and illuminate the quantitative findings. METHODS: Eighty-eight dyads were recruited and allocated on a regional basis to an intervention or control group. Intervention group dyads received the Early Diagnosis Dyadic Intervention. Control group dyads received two information manuals. Quantitative data were collected at three time points. Qualitative data were collected via evaluation questionnaires and semistructured interviews. RESULTS: Intervention structure, content, and delivery were acceptable to the dyads but few quantitative self-efficacy findings reached statistical significance. Improvements in self-efficacy were evident in the postintervention evaluation qualitative responses where dyads expressed greater confidence in identifying and accessing community support. CONCLUSION: There is an urgent need for effective psychosocial interventions to help reduce the impact of dementia symptoms on patients, carers, and society. This study makes an important contribution to our understanding of the capacity of psychosocial interventions to improve self-efficacy outcomes for care recipient/carer dyads with early-stage dementia while also illustrating the challenges associated with measuring self-efficacy in the early stages of the condition.

Hospital discharge processes involving older adults living with dementia: An integrated literature review.

AIMS AND OBJECTIVES: To identify barriers and facilitators to engagement of people with dementia and family carers in planning for discharge from hospital. BACKGROUND: Hospital discharge can be particularly challenging for older people with dementia. To assist in the development of bespoke discharge processes that address the unique needs of older people with dementia, an integrated review of the literature was undertaken. DESIGN AND METHODS: A four-stage integrative review framework guided the review. Three search strategies were employed: a computerised database search, a hand search of reference lists and forward citation searching. Paired members of the research team reviewed eligible full-text papers. The methodological quality of each paper was assessed using the Mixed-Methods Assessment Tool, followed by data extraction and completion of summary tables. Within and across study analysis and synthesis of study findings was undertaken using thematic synthesis. RESULTS: Fifteen papers were included in the review. Most identified barriers to collaborative discharge processes related to distributed responsibility for discharge, risk averse approaches to discharge, limited family carer confidence, and limited validation of assumptions about family competency to manage at home. Facilitators included supported clinician and family carer engagement, and maintaining independence for activities of daily living. RELEVANCE TO CLINICAL PRACTICE: Reflective analysis of discharge decisions, focused on risk and possible risk aversion, can assist teams to evaluate the quality of their discharge decisions. The use of formal communication strategies such as a patient/family-held journal of the hospital experience and a structured family meeting early in the hospital admission can enhance family engagement in discharge planning. Prevention of functional and cognitive decline is emerging as critical to improving hospital discharge outcomes.

Community practitioner involvement in collaborative research.

This paper focuses on the benefits and limitations of collaborative research in community-based service settings explored through the implementation of a psychosocial intervention. The study aimed to establish the effectiveness of working with dementia dyads (person with dementia and family caregiver) in the early stages of dementia and to recruit and train an existing practitioner workforce to deliver a psychosocial intervention designed to assist dementia dyads to manage the consequences of dementia. Seven intervention staff participated in post-intervention semi-structured interviews. Whilst staff recruitment and retention proved challenging the degree to which staff demonstrated the required communication skills and competence was an important component in dyad acceptability of the intervention. Participatory factors, collaborative development, selective recruitment, focused training and ongoing specialist support, can assist the implementation of practice-based research. However, intervention staff participation and therefore intervention delivery can be hampered by workplace culture and workforce demands.

Caring for older people with dementia: an exploratory study of staff knowledge and perception of training in three Australian dementia care facilities.

AIM: To ascertain care staff's knowledge of dementia relating to aetiology and/or pathology, symptoms and care/treatment; and explore their perceptions of the importance and adequacy of dementia education and training opportunities. METHODS: Thirty-five care staff working in three secure dementia care facilities were recruited. Dementia knowledge was surveyed using the Staff Knowledge of Dementia Test (SKDT). Perceptions of dementia education and training were examined via semi-structured individual interviews. RESULTS: An average of 21 out of 33 SKDT questions (SD = 4.0) was correctly answered. Knowledge discrepancy was attributed to participants' cultural and ethnic origin and the length of residency in Australia of migrant care staff. Participants acknowledged the importance of dementia education and training but were critical of the content relevancy to direct care practices. CONCLUSION: There is a need to improve care staff knowledge of dementia, and dementia education and training should include direct practical competencies required for effective care delivery.

Why carers of frail older people are not using available respite services: an Australian study.

AIM: The purpose of this study was to explore the limiting and motivating factors that influence carers' use of respite services and the ability of currently available respite services to meet the needs of carers of frail older people. BACKGROUND: The development of community carer support services, their availability and usage and the common barriers that affect or impact on carers' use of community services in general and respite services in particular need to be examined to ensure they meet client needs. DESIGN: A qualitative descriptive approach informed by critical social theory was used to expose the inequities inherent in community services. METHODS: A qualitative examination of carer relationships with respite services was informed and guided by critical theory. Sixteen carers took part in four focus groups. A purposeful sampling strategy was adopted to engage with carers not currently using respite services. Study participants were recruited from a state-wide carer support organisation and a community service organisation in Queensland, Australia. RESULTS: Three themes emerged from the data: 'Commitment' characterised by reciprocity, role definition and role frustration, 'Needing Help' discussed in terms of trust, confidence in service, fear and resistance, and 'Support' discussed in relation to informal networking, misinformation and lack of knowledge. CONCLUSION: This study improves our understanding of the caring role, its significance in carer's lives and how this shapes their formal service expectations and use. The findings suggest that further investigation of the factors involved in carers' service expectations and service-seeking is warranted to develop a deeper understanding of how care giving influences the ways carers seek help from formal services. RELEVANCE TO CLINICAL PRACTICE: Service delivery changes towards a model of care, which engages and promotes user control and fosters genuine participatory relations between informal and professional carers may improve uptake of respite services.