Kate-Ellen Elliott

Dementia Knowledge Assessment Scale: Development and Preliminary Psychometric Properties

To develop a reliable and valid dementia knowledge scale to address limitations of existing measures, support knowledge evaluation in diverse populations, and inform educational intervention development.

What should we know about dementia in the 21st Century? A Delphi consensus study

BackgroundEscalating numbers of people are experiencing dementia in many countries. With increasing consumer needs, there is anticipated growth in the numbers of people providing diagnostic evaluations, treatments, and care. Ensuring a consistent and contemporary understanding of dementia across all of these groups has become a critical issue. This study aimed to reach consensus among dementia experts from English speaking countries regarding essential and contemporary knowledge about dementia.MethodsAn online Delphi study was conducted to examine expert opinion concerning dementia knowledge with three rounds of data collection. A sample of dementia experts was selected by a panel of Australian experts, including a geriatrician and three professors of aged care. Purposive selection was initially undertaken with the sample expanded through snowballing. Dementia experts (N = 19) included geriatricians, psychologists, psychiatrists, neuroscientists, dementia advocates, and nurse academics from the United Kingdom, United States, and Australia. In the first round, these participants provided open-ended responses to questions determining what comprised essential knowledge about dementia. In the second round, responses were summarised into 66 discrete statements that participants rated on the basis of importance. In the third round, a rank-ordered list of the 66 statements and a group median were provided and participants rated the statements again. The degree of consensus regarding importance ratings was determined by assessing median, interquartile range, and proportion of experts scoring above predetermined thresholds. Correlation scores were calculated for each statement after the final round to identify changes in statement scores.ResultsThe Delphi experts identified 36 statements about dementia that they considered essential to understanding the condition. Statements about care for a person experiencing dementia and their care giver represented the largest response category. Other statements, for which full or very high consensus was reached, related to dementia characteristics, symptoms and progression, diagnosis and assessment, and treatment and prevention.ConclusionsThese results summarise knowledge of dementia that is considered essential across expert representatives of key stakeholder groups from three countries. This information has implications for the delivery of care to people with the condition and the development of dementia education programs.

A new standard in dementia knowledge measurement: Comparative validation of the Dementia Knowledge Assessment Scale and the Alzheimer’s Disease Knowledge Scale.

To compare the psychometric performance of the Dementia Knowledge Assessment Scale (DKAS) and the Alzheimers Disease Knowledge Scale (ADKS) when administered to a large international cohort before and after online dementia education.

Leisure Time Activities and Mental Health in Informal Dementia Caregivers.

OBJECTIVES Dementia prevalence and the demand for dementia care are increasing. Informal caregiving accounts for a large proportion of dementia care, but can come at high cost for caregivers. Informal dementia caregivers are at higher risk for mental health problems than the general population. This study examines whether perceived change in leisure activities is one working mechanism linking stress and burden experience in dementia caregiving to lower mental health (depressive symptoms, anxiety symptoms, and reduced satisfaction with life), and whether there are group-based leisure activities that can buffer this detrimental effect. METHODS A total of 346 informal Australian dementia caregivers (88.15% female, age 18-82 years) participated in an online study. RESULTS Mediation and moderation analyses using multiple regression demonstrated that perceived changes in leisure activities linked caregiving stress and burden to lower mental health, and that membership in groups engaging in affiliation or social activities attenuates negative effects of caregiving. CONCLUSION Informal dementia caregivers benefit from satisfying leisure activities. In particular, engaging in social activities and self-help groups buffered the negative impact of caregiving.

Caring for the carer: a systematic review of pure technology-based cognitive behavioral therapy (TB-CBT) interventions for dementia carers

Background: Face-to-face delivery of CBT is not always optimal or practical for informal dementia carers (DCs). Technology-based formats of CBT delivery (TB-CBT) have been developed with the aim to improve client engagement and accessibility, and lower delivery costs, and offers potential benefits for DCs. However, research of TB-CBT for DCs has maintained heavy reliance on therapist involvement. The efficacy of pure TB-CBT interventions for DCs is not currently established Methods: A systematic review of trials of pure TB-CBT intervention for DCs from 1995 was conducted. PsycINFO, Cochrane Reviews, Scopus and MedLine databases were searched using key terms related to CBT, carers and dementia. Four hundred and forty two articles were identified, and inclusion/exclusion criteria were applied; studies were only retained if quantitative data was available, and there was no active therapist contact. Four articles were retained; two randomized and two waitlist control trials. Methodological and reporting quality was assessed. Meta-analyses were conducted for the outcome measures of caregiver depression. Results: Meta-analysis revealed small significant post-intervention effects of pure TB-CBT interventions for depression; equivalent to face-to-face interventions. However, there is no evidence regarding long-term efficacy of pure TB-CBT for DCs. The systematic review further identified critical methodological and reporting shortcomings pertaining to these trials Conclusions: Pure TB-CBT interventions may offer a convenient, economical method for delivering psychological interventions to DCs. Future research needs to investigate their long-term efficacy, and consider potential moderating and mediating factors underpinning the mechanisms of effect of these programs. This will help to provide more targeted interventions to this underserviced population.

Profiles of dyadic adjustment for advanced prostate cancer to inform couple-based intervention

Objective: The purpose of the study is to describe from a relational perspective, partners’ psychological adjustment, coping and support needs for advanced prostate cancer. Design: A mixed methods design was adopted, employing triangulation of qualitative and quantitative data, to produce dyadic profiles of adjustment for six couples recruited from the urology clinics of local hospitals in Tasmania, Australia. Methods: Dyads completed a video-taped communication task, semi-structured interview and standardised self-report questionnaires. Results: Themes identified were associated with the dyadic challenges of the disease experience (e.g. relationship intimacy, disease progression and carer burden). Couples with poor psychological adjustment profiles had both clinical and global locus of distress, treatment side-effects, carer burden and poor general health. Resilient couples demonstrated relationship closeness and adaptive cognitive and behavioural coping strategies. The themes informed the adaption of an effective program for couples coping with women’s cancers (CanCOPE, to create a program for couples facing advanced prostate cancer (ProCOPE-Adv). Conclusion: Mixed method results inform the development of psychological therapy components for couples coping with advanced prostate cancer. The concomitance of co-morbid health problems may have implications for access and engagement for older adult populations in face-to-face intervention.

Residents with mild cognitive decline and family members report health students ‘enhance capacity of care’ and bring ‘a new breath of life’ in two aged care facilities in Tasmania

Care provided by student doctors and nurses is well received by patients in hospital and primary care settings. Whether the same is true for aged care residents of nursing homes with mild cognitive decline and their family members is unknown.

We are not all coping: a cross-sectional investigation of resilience in the dementia care workforce.

Research on workforce development for high‐quality dementia care more often focuses on enhancing employee knowledge and skill and less on managing employee stress and coping at work.

“Bringing the outside world in”: Enriching social connection through health student placements in a teaching aged care facility

Older adults living in residential aged care facilities (RACFs) often experience limited opportunities for social connection despite close proximity to peers, which has implications for mental health and quality of life (QoL). The introduction of large‐scale undergraduate health student placements in RACFs may enhance opportunities for meaningful engagement through social connection, although this remains unexplored.