'It was never about me': A qualitative inquiry into the experiences of psychological support and perceived support needs of family caregivers of people with high-grade glioma.

BACKGROUND: Family caregivers of people with high-grade glioma often report high rates of psychological distress, which has been attributed to the unique aspects of the disease and onerous care demands. Clinical practice guidelines advocate for caregiver support from diagnosis through to end-of-life and bereavement. Yet, research has identified that caregivers' support needs are often overlooked. AIM: To explore caregivers' experiences of psychological support and perceptions of what constitutes optimal psychological support for caregivers in the context of high-grade glioma. DESIGN: Qualitative study involving semi-structured interviews with data analysed using reflexive thematic analysis. SETTING/PARTICIPANTS: Eighteen current (n = 11) and bereaved (n = 7) family caregivers (73% female, aged 33-69 years) of adults with high-grade glioma participated. Interviews explored caregivers' perceptions of psychological support. RESULTS: Two major themes were generated. The first theme, 'It was never about me', reflected caregivers prioritise for people with high-grade glioma to be well supported despite experiencing their own unmet psychological support needs. The second theme, 'Continuous, coordinated and personalised support', highlighted the importance of timely and tailored interventions addressing caregivers' practical, educational and emotional support needs throughout the illness journey. CONCLUSIONS: Caregivers commonly prioritise the support needs of people with high-grade gliomas; yet, have their own distinct needs that vary throughout the illness. Primary care providers have a potential role in facilitating timely access to palliative care, practical support and brain tumour-specific psychological support to meet caregivers' diverse needs across the care continuum in the context of high-grade glioma.

Individuals' perceptions of health and well-being in the context of stereotactic radiosurgery for benign brain tumour: A longitudinal qualitative investigation.

BACKGROUND AND OBJECTIVES: Treatment-related outcomes after Gamma Knife Stereotactic Radiosurgery (GKSRS) for benign brain tumour are well-established; yet patient reported outcomes have been largely overlooked. This study explored individuals' perspectives of their health and well-being prior to and following GKSRS. METHOD: Twenty adults (65% female) aged 24-71 years with benign brain tumour were recruited from a major metropolitan hospital and assessed approximately one week prior to, two weeks after, and at three months following GKSRS. They completed telephone-based interviews focusing on general health, symptoms, and well-being. Interviews were transcribed and analysed using thematic analysis. RESULTS: Three major themes characterized individuals' perceptions of their health and well-being. "Understanding my Illness and Treatment" reflected individuals' efforts to make sense of their illness and symptoms to reduce ambiguity and increase sense of control. "Experiencing Gamma Knife" related to expectations of the procedure, outcomes, daily impacts, and emotional reactions. "Adjusting one's Mindset and Coping" characterised how peoples' approaches to coping with their illness were altered over time. CONCLUSIONS: Coping and adjustment is highly individualistic in the context of GKSRS. Over time, most individuals were able to make sense of their illness, adjust their mindset and utilize behavioural strategies and support systems to cope with the long-term effects.

Access to psychosocial support for people with brain tumor and family members: Healthcare professional perspectives.

OBJECTIVES: Ongoing access to psychosocial support is important to maintain the well-being of people with brain tumor (PwBT) and their families; yet, there is limited knowledge of psychosocial care access. This qualitative study aimed to develop an understanding of psychosocial support pathways specific to PwBT from the perspectives of Australian healthcare professionals. METHODS: Semi-structured interviews were conducted with 21 healthcare professionals working in hospital and community services supporting PwBT and their family members. Transcribed interviews were coded and analyzed thematically. RESULTS: The three major themes identified were: (1) Challenges in fitting people into the care system within existing pathways; (2) Benefits of longer-term care coordination and interdisciplinary connections; and (3) Brain tumor affects the whole family. Despite established psychosocial care pathways, service access varied and lacked continuity for individuals with lower-grade glioma and benign tumors across the illness trajectory. CONCLUSIONS: Healthcare professionals recognize the need for improved access to care coordination and multidisciplinary psychosocial care tailored to the varying needs of PwBT and their families.

The early impacts of COVID-19 on unpaid carers of people living with dementia: part II of a mixed-methods systematic review.

OBJECTIVES: With a lack of existing comprehensive reviews, the aim of this mixed-method systematic review was to synthesise the evidence on the early impacts of the pandemic on unpaid dementia carers across the globe. METHODS: This review was registered on PROSPERO [CDR42021248050]. PubMed, CINAHL, Embase, Scopus and Web of Science were searched from 2020 to July 2021. Studies were included if they reported on the different impacts of the pandemic on unpaid dementia carers aged 18+, with papers published in English, German, Polish, or Spanish. A number of research team members were involved in the selection of studies following PRISMA guidance. RESULTS: Thirty-six studies (43 papers) from 18 countries reported on the early impact of the pandemic on unpaid dementia carers. Impacts were noted on accessing care and support; carer burden; and well-being. Studies found that carers had limited access to care and support services, increased workload, enhanced feelings of social isolation, and reduced wellbeing. Specifically, reductions in access to care and support increased carer's unpaid caring tasks, removing any opportunities for temporary respite, and thus further increasing carer burden and reducing mental well-being in many. CONCLUSIONS: The needs of unpaid dementia carers appear to have increased during the pandemic, without adequate support provided. Policy initiatives need to enable better mental health support and formal care provision for unpaid carers and their relatives with dementia, whilst future research needs to explore the long-term implications of carer needs in light of care home restrictions and care delivery.

The early impacts of COVID-19 on people living with dementia: part I of a mixed-methods systematic review.

Objectives: The aim of this Part I systematic review was to understand the impact of the COVID-19 pandemic on the lives of people with dementia living in the community or in residential care. Part II focused on unpaid carers.Methods: This review was registered on PROSPERO [CRD42021248050]. Five data bases (PubMed, CINAHL, Embase, Scopus, Web of Science) were searched in July 2021. Studies were included if they reported on the impacts of the pandemic on people living with dementia, either in the community or residential settings, and published in English, German, Polish, or Spanish. Risk of bias was assessed using the Standard Quality Assessment QualSyst.Results: Forty papers from 33 studies reported on the effects of COVID-19 on people with dementia. Included studies were conducted across 15 countries, focusing on single-country evaluations except in one study. Three studies focused on care homes, whilst the remainder reported on the community. Studies were categorised into five impacts: Cognition; Independence and physical functioning; Behavioural symptoms; Well-being; and Access to care. All studies evidenced the negative pandemic impacts, including faster cognitive, physical, and behavioural deterioration, limited access to care, and poorer mental and social health.Conclusions: Future restrictions need to consider the need for people with dementia to stay cognitively, physically, and socially stimulated to live well, and this review provides a call for a future pandemic strategy for dementia. Longitudinal research is required on the long-term impacts of the pandemic on the lives of people with dementia, including time to care home entry.

Scoping the psychological support practices of Australian health professionals working with people with primary brain tumor and their families.

OBJECTIVES: This study aimed to scope the psychological support practices of Australian health professionals providing supportive care to adults with primary brain tumor. METHOD: Health professionals from multidisciplinary organizations and cancer support services completed an online survey focused on psychological support for people with brain tumor (PwBT) and family members, and perceived barriers or gaps in support provision. RESULTS: 107 professionals, mainly from psychology (45%), nursing (20%), and social work (10%) backgrounds, completed the survey. Scope of practice differed according to discipline, with psychologists and nurses most likely to screen for psychological distress (71%-76%), and psychologists more typically providing at least one psychological support session (78%). Psychologists were more likely to screen for cognitive impairment (31%), whereas nurses and social workers more commonly provided family-based support (62%-73%). Psychological support was more frequently provided in the long-term management phase (78%) than early post-diagnosis/treatment (45%). System-level barriers to accessing psychological support were most frequently identified, which included limited resources and funding, insufficient staff time, lengthy waitlists and costs, poor service coordination, and lack of staff with brain tumor-specific training. CONCLUSIONS: The provision of psychological support for PwBT varies according to discipline, setting and management phase. Further research on different models of psychosocial care is needed to inform strategies to address organizational and policy factors impacting professionals' scope of practice.

Use of technology by people with dementia and informal carers during COVID-19: A cross-country comparison.

OBJECTIVES: Considering the adverse outcomes of COVID-19, it is essential to provide adequate support and care for people with dementia and informal carers. Technology can reduce the distress associated with social distancing rules and the decreased access to in-person services. This study aimed to explore the use of technology and its perceived effects across different settings and countries. METHODS: The sample was composed of 127 informal carers and 15 people with dementia from the UK, Italy, Australia and Poland. Semi-structured interviews explored participants' experiences of using technology and their perceived effects. Transcripts were analysed by researchers in each country using an inductive approach. RESULTS: Three overarching themes were developed: (1) Technology kept us alive during COVID-19; (2) Remote care was anything but easy; (3) Perceived technology limitations. Many similarities emerged between countries supporting the role of technology for being socially engaged, having a routine, and staying active. However, the benefits of technology for health and psychosocial care were more limited. Across countries, barriers to the access and use of technology included lack of digital literacy, dementia severity, and lack of appropriate digital environments. Help and supervision from carers were also necessary and sometimes perceived as an additional burden. CONCLUSIONS: Technology can effectively reduce the shrinking world that may be amplified by the pandemic, thus preserving people with dementia's social skills and maintaining family connections. However, for more extensive and well-adapted use of technology in dementia care, actions should be taken to overcome the barriers to the access and use of technology by older and vulnerable people globally.

A qualitative 5-country comparison of the perceived impacts of COVID-19 on people living with dementia and unpaid carers.

BACKGROUND: Emerging evidence shows an impact of the COVID-19 pandemic on people living with dementia and informal carers, without any evidence-based global comparison to date. The aim of this international study was to explore and compare the perceived impact of COVID-19 and associated public health restrictions on the lives of people living with dementia and informal carers and access to dementia care across five countries. METHODS: Informal carers and people living with dementia who were residing in the community in the UK, Australia, Italy, India, and Poland were interviewed remotely between April and December 2020. Participants were asked about their experiences of the pandemic and how restrictions have impacted on their lives and care. Transcripts were analysed by researchers in each country using inductive thematic analysis. RESULTS: Fifteen people living with dementia and 111 informal carers participated across the five countries. Four themes emerged: (1) Limited access and support; (2) Technology and issues accessing remote support; (3) Emotional impact; and (4) Decline of cognitive and physical health reported by carers. Whilst variations were noted, the pandemic has indirectly affected people with dementia and carers across all five countries. The pandemic removed access to social support services and thus increased carer burden. Remote services were not always provided and were very limited in benefit and usability for those with dementia. As a result, carers appeared to notice reduced cognitive and physical health in people with dementia. Particular differences were noted between India and Poland vs. the UK, Italy, and Australia, with less impact on care provision in the former due to limited uptake of support services pre-pandemic based on cultural settings. CONCLUSIONS: The pandemic has amplified dementia as a global public health problem, and people affected by the condition need support to better access vital support services to live well.

How Did the COVID-19 Restrictions Impact People Living With Dementia and Their Informal Carers Within Community and Residential Aged Care Settings in Australia? A Qualitative Study.

The aim of this study was to explore how formal social support changed after implementation of the COVID-19 public health measures and how these restrictions affected people living with dementia and their informal carers in Australia. Sixteen informal carers and two people living with dementia were interviewed between August and November 2020. Participants were asked about their experiences of the pandemic and the impact that the restrictions had on their lives and care. Thematic analysis identified four overarching themes describing (a) prepandemic limitations of the aged care system, (b) the aged care system's response to the COVID-19 restrictions, (c) changes affecting informal carers, and (d) the challenges faced by people living with dementia. The findings highlighted the challenges faced by the Australian aged care system before the pandemic and the additional burden placed on informal carers who supported people living with dementia across residential and home settings during the pandemic.

Does the Meeting Centre Support Programme decrease the experience of stigmatisation among people with cognitive deficits?

OBJECTIVES: This is the first study to focus on the role and impact of a psychosocial intervention, the Meeting Centre Support Programme (MCSP), for people living with dementia and mild cognitive impairment (MCI) on the experience of stigmatisation across three different European countries. METHOD: A pre/post-test control group study design compared outcomes for 114 people with dementia (n=74) and MCI (n=40) in Italy, Poland and the UK who received either the MCSP or usual care (UC). The 'Stigma Impact Scale, neurological disease' (SIS) was administered at two points in time, 6 months apart. The Global Deterioration Scale (GDS) was used to assess the level of cognitive impairment. RESULTS: Although statistical analysis did not show any significant differences between MCSP and UC at pre/post-test for the 3 countries combined, there were significant results for individual countries. In Italy, the level of SIS was significantly lower (p=0.02) in the MCSP group following the intervention. The level of Social Isolation increased significantly (p=0.05) in the UC group at follow-up in Poland. The level of Social Rejection was significantly higher (p=0.03) over time for UK participants receiving MCSP compared to UC. CONCLUSION: The experience of stigma by people living with dementia and MCI is complex and there may be different country specific contexts and mechanisms. The results do not enable us to confirm or disconfirm the impact of a social support programme, such as MCSP, on this experience. Difficulties in directly measuring the level of stigma in this group also requires further research.

Meeting centres support programme highly appreciated by people with dementia and carers: a European cross-country evaluation.

BACKGROUND: The Meeting Centres Support Programme (MCSP) offers a combined approach to providing practical, emotional and social support to people living with mild to moderately severe dementia and their family carers in the community. METHODS: A mixed methods explanatory design was used. The evaluation took place within the framework of the international Joint Programme - Neurodegenerative Disease Research (JPND) - MEETINGDEM study in nine Meeting Centres in Italy, Poland and the United Kingdom. Eighty-seven people with dementia and 81 family carers completed a user evaluation survey after three months and 83 people with dementia and 84 carers after 6 months of participation in MCSP. Thirty-two people with dementia and 30 carers took part in focus groups after nine months. RESULTS: The percentage of people with dementia who were very satisfied with the programme increased significantly over time (p = 0.05). The majority of carers reported that they felt less burdened after three months of participation in MCSP (48.1% much less; 35.4% a little less). After six months, this percentage increased significantly to 91% (p = 0.04, 57.7% much less; 33.3% little less). Focus group analysis showed that people with dementia and carers in all countries/centres improved their ability to maintain emotional balance. CONCLUSIONS: The MCSP is highly appreciated by people with dementia and carers in all countries and it confirms the results of previous research into MCSP in the Netherlands. Our findings indicate that MCSP is a model that can help its users to increase their capacity to deal with the challenges caused by dementia and can promote emotional balance.

Portable EEG monitoring for older adults with dementia and chronic pain - A feasibility study.

Given the reduced ability of people with dementia to self-report pain, this study examined the feasibility of using a portable electroencephalography (EEG) headband (MUSE 2) as a pain measurement tool for long-term care residents with dementia. Ten minutes of resting-state EEG was acquired by MUSE 2 from people with dementia experiencing ongoing pain (n = 3) and without current pain (n = 1) over three days. The MUSE 2 was acceptable and feasible for use in people with dementia while challenges regarding software, data collection and analysis in using this device are reported. Compared to the resident not experiencing pain, EEG signals of residents with ongoing pain showed different EEG patterns, and this could be a potential biomarker to support pain measurement in people with dementia. Further research with larger sample size is warranted to verify study results.

Do people with dementia and mild cognitive impairments experience stigma? A cross-cultural investigation between Italy, Poland and the UK.

Objectives: Until now little research has been done to answer the question of whether people with dementia experience stigma. No previous studies investigated possible differences between countries and cultures. Therefore, the aims of this study were to compare the experience of stigma (with social isolation, social rejection and internalised shame as components) among people with dementia and mild cognitive impairment (MCI) (n = 180) in Italy (n = 79), Poland (n = 47) and the United Kingdom (UK) (n = 54); and to investigate possible relationships with demographical and clinical outcomes.Methods: A one group multinational cross-sectional design was used. Stigma was measured with the Stigma Impact Scale (SIS), quality of life aspects with Dementia Quality of Life scale (DQOL) and Quality of Life Alzheimer's Disease scale (QOL-AD), social support with Duke Social Support Index (DSSI), cognitive functioning with Global Deterioration Scale (GDS).Results: The level of stigmatisation (SIS) among study participants varied from 2 to 65 (median = 33.5; Q1 = 27; Q3 = 41). People with dementia in the UK experienced a higher level of stigmatisation than people in Italy and Poland. The experienced stigmatisation negatively correlated with social support (DSSI; rho = -0.42, p = 0.000) and quality of life (QOL-AD; rho = -0.39, p = 0.000). People who experienced a higher level of stigmatisation scored higher in negative mood DQOL subscale (rho = 0.28, p = 0.0002).Conclusion: There is a strong need for research into the individual experience of people with dementia across the world. This could help in providing support and care services that match their experience, needs, preferences; and in designing well informed awareness campaigns based on their voice.

Reliability and validity of the telephone-based version of the Montgomery-Asberg depression rating scale for assessing depression in individuals with primary brain tumour.

This study aimed to examine interrater reliability and construct validity of the Montgomery-Asberg Depression Rating Scale (MADRS) semi-structured interview for assessing depression in adults with a primary brain tumour.Fifty adults with a primary brain tumour (mean age = 45.86, SD = 12.48) reporting at least mild distress (Distress Thermometer [DT] ≥ 4) were recruited from a multidisciplinary brain tumour clinic and administered a telephone-based cognitive screener, MADRS, Depression Anxiety Stress Scales (DASS) depression subscale and Generalised Anxiety Disorder-7 (GAD-7). Audiotaped interviews were transcribed and then scored by two independent raters.Interrater reliability for the MADRS total score was excellent (ICC = 0.98) and ranged from good to excellent (ICC = 0.83-0.96) for MADRS items. The MADRS total score was significantly associated with the DT, DASS depression, and GAD-7 (r = 0.50-0.76, p < 0.001), thus providing evidence of construct validity. Individuals with poorer cognitive function reported higher levels of depression.The findings provide psychometric support for the MADRS as a semi-structured interview for assessing depression after brain tumour. Further research investigating the sensitivity and specificity of the MADRS is recommended.

The Montgomery Asberg Depression Rating Scale can be used to reliably assess depression in individuals with primary brain tumour.Individuals with poorer cognitive function may be at greater risk of developing depression after brain tumour.Semi-structured interviews such as the Montgomery Asberg Depression Rating Scale may support clinicians to distinguish depressive symptoms from effects of the illness, thus helping to identify individuals who most warrant psychological support.

Technology in aged care: a qualitative survey of academic, research, and technology industry professionals.

AIMS AND OBJECTIVES: The study's aim was two-fold: (1) to explore the experiences and perceptions of industry, academic, and research professionals concerning technologies used within aged care; and (2) to identify needs-led priorities for the future development and application of technologies within aged care. BACKGROUND: Global population ageing requires a recalibration of aged care policies, systems, and services to promote and support healthy ageing. It is expected that technology will play an important role in this regard. This study qualitatively assessed the landscape of technology use in aged care from the perspective of industry, academic, and research professionals. DESIGN: A purposefully designed cross-sectional survey collecting experiences, perspectives, and barriers about technology through open responses. METHODS: Using convenience sampling, thirty-five participants completed an online survey between April and October 2020. A descriptive qualitative content analysis approach was used to analyse the written responses. Reporting of findings followed the EQUATOR's Standards for Reporting Qualitative Research checklist. RESULTS: Four themes were identified that characterised the use of technologies within aged care: (1) User Perceptions and Attitudes: wariness and reluctance to technology; (2) Systemic Issues within Aged Care: Under-resourced with opportunities for innovation; (3) Technology-Related Barriers: Equity, costs, privacy, integration, and interoperability and (4) Research Priorities: Co-design and integration of technology. CONCLUSIONS: The existing technology does not meet the needs of older people, aged care personnel and the system in general, which prevents its successful implementation and uptake.

Therapeutic use of the humanoid robot, Telenoid, with older adults: A critical interpretive synthesis review.

This review sought to critically evaluate the use of the teleoperated humanoid robotic communications device, Telenoid, for therapeutic purposes with older adults, and identify and highlight key considerations for future research and clinical practice within gerontechnology. A critical interpretive synthesis was conducted, with nine electronic databases and online sources searched using the keyword "Telenoid." Studies were included in the review if they were: written in English; reported primary research; employed a qualitative, quantitative, or mixed-method design; and described or measured effects, experiences, or perceptions of using Telenoid for therapeutic purposes with older adults. Critical engagement with the studies identified key themes, as well as opportunities to advance future research. Ten studies involving Telenoid were identified, with eight focused on older adults living with dementia. Study findings centered around two themes: effects (including positive effects and negative reactions), and challenges and considerations (including technical issues, operator training, acceptability, and dosage). Although several issues currently challenge the use of Telenoid, available studies show some therapeutic potential of using Telenoid with older adults, including those living with dementia, particularly for communication and mood. Higher-quality studies are required to advance understanding, and considerations for the field are outlined to aid development.

Consumer and Provider Perspectives on Technologies Used Within Aged Care: An Australian Qualitative Needs Assessment Survey.

We undertook a qualitative assessment of aged care technology needs from the perspective of consumers and providers using a cross-sectional survey that assumed a largely open-response format. We recruited a convenience sample of individuals aged 18 years or older, lived in Australia, and self-identified as either an older adult (n = 133), an informal caregiver of an older adult (n = 27), and/or clinician, healthcare practitioner, and aged care provider (n = 148). Survey responses were analyzed using a descriptive qualitative content analysis approach to interpret meaning from written survey responses. We identified seven themes reporting that technologies used in aged care do not appear to be meeting end-user needs. Supporting the Technology Acceptance Model, consumers and providers perceive usefulness of the technology and its actual ease of use as drivers of acceptance toward gerontechnology. Ten recommendations are proposed to support technology use and the quality of aged care.

The effectiveness of smart home technologies to support the health outcomes of community-dwelling older adults living with dementia: A scoping review.

OBJECTIVES: To map the current state-of-knowledge about the effectiveness of smart home technologies to support the health outcomes of community-dwelling older adults living with dementia. DESIGN: A scoping review following the methodological frameworks described by Arksey and O'Malley (2005) and Levac et al. (2010). DATA SOURCES: Electronic databases and online sources were searched in April 2020 using database specific medical subject headings and keywords about 'smart homes' and 'dementia'. METHODS: Empirical peer-reviewed articles were included if they were written in English; used a quantitative, qualitative, or mixed method design; and presented the effects of a smart home technology on the health outcomes of community-dwelling adults living with dementia. Methodological and reporting quality of studies was assessed using the Mixed Methods Appraisal Tool - Version 2018. RESULTS: Five studies described evaluations of five smart home technology systems with a total of n = 617 community-dwelling people living with dementia. Collectively, studies showed potential effectiveness of the technologies on a range of health outcomes (physical activity, activities of daily living, sleep, anxiety, depression, agitation, irritability, risk of falls, cognitive functioning, night-time injury, unattended home exits). However, the overall methodological and reporting quality of studies was low and profiled a research field lacking in rigorous evaluation. CONCLUSIONS: Based on current evidence, the success of smart home technologies to support people with dementia to live at home remains unclear. Recommendations are provided to inform future research into smart home technologies for community-based dementia care.

The improvement of cognitive deficits after whole-body cryotherapy - A randomised controlled trial.

BACKGROUND: Whole-body cryotherapy (WBC) - a repetitive, short-term exposure to extremely low temperatures - may become an effective early intervention for mild cognitive impairment (MCI). It is a heterogeneous group of symptoms associated with cognitive dysfunction which is estimated to transform into dementia in 50% cases. STUDY DESIGN: The prospective randomised double-blind sham-controlled study aimed to determine the efficacy of WBC on cognitive functioning and biological mechanisms. The study was registered with Australian New Zealand Clinical Trials Registry (ACTRN12619001627145). METHODS: Participants with MCI (n = 62; (2026) were randomly allocated to cryogenic temperatures (-110 °C till -160 °C) (EG, n = 33) or placebo-controlled group (CG, n = 29). Cognitive functions were measured at baseline (T1), after the 10th WBC session (T2) and after 2 week-break (T3) with DemTect, SLUMS and Test Your Memory (TYM). Secondary outcome measures included quality of life (WHOQoL-BREF), self-reported well-being (VAS) and depressive symptoms (GDS). Whole blood samples (10 ml) were collected at T1 and T2 to evaluate levels of cytokines, neurotrophins, NO and biochemical parameters CRP total cholesterol, prolactin). RESULTS: There were significant differences between groups measured at T2 in immediate recall (DemTect) and in orientation (TYM) in favour of WBC group. Improvement in mood was detected in self-reported depressive symptoms level (WHOQoL-26; T2 p = 0.04; VAS mood T2 p = 0.02; T3 p = 0.07). The significant reduction of BDNF level was observed (p < 0.05). CONCLUSIONS: WBC may increase the performance of cognitive functions. It seems promising to combine WBC with existing behavioural and cognitive trainings in the future studies investigating early interventions methods in MCI.