Publications by authors named "Gill Livingston"

224 Publications

Impact of the COVID-19 pandemic on older adults mental health services: A mixed methods study.

Int J Geriatr Psychiatry 2021 Jul 3. Epub 2021 Jul 3.

Division of Psychiatry, University College London, London, UK.

Objectives: The COVID-19 pandemic has had a significant impact on older adults mental health care. Our study aimed to explore staff perspectives on key challenges and innovations in order to help inform the delivery of older adults mental health care in subsequent waves of the pandemic.

Methods: A mixed methods online questionnaire developed by National Institute for Health Research Mental Health Policy Research Unit was used to gather staff perspectives on their challenges at work, problems faced by service users and their carers, and sources of help and support. Descriptive statistics were used for quantitative analysis and descriptive content analysis for qualitative analysis.

Results: 158 participants, working in either community or inpatient settings, and from a range of professional disciplines, were included. For inpatient staff, a significant challenge was infection control. In the community, staff identified a lack of access to physical and social care as well as reduced contact with friends and families as being challenges for patients. Remote working was seen as a positive innovation along with COVID-19 related guidance from various sources and peer support.

Conclusion: Our study, with a focus on staff and patient well-being, helps to inform service development for future waves of the pandemic. We discuss measures to improve infection control in inpatient settings, the role of voluntary organisations in supporting socially isolated community patients, the need for better integration of physical and mental health services at an organisational level, and the importance of training staff to support patients and their families with end of life planning.
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http://dx.doi.org/10.1002/gps.5596DOI Listing
July 2021

Implementation of START (STrAtegies for RelaTives) for dementia carers in the third sector: Widening access to evidence-based interventions.

PLoS One 2021 2;16(6):e0250410. Epub 2021 Jun 2.

University College London, London, United Kingdom.

Family members remain the main care providers for the increasing numbers of people with dementia, and often become depressed or anxious. In an implementation research project, we aimed to widen access to Strategies for RelaTives (START), a clinically and cost-effective intervention for the mental health of family carers, by laying the foundations for its implementation in the third sector. We used the integrated Promoting Action on Research Implementation in Health Services (i-PARIHS) framework to guide implementation of START, a manual-based, individually-delivered, multicomponent eight-session coping strategy intervention. We interviewed a maximum variation sample of twenty-seven stakeholders from the English Alzheimer's Society (AS), about possible difficulties in management, training, and delivery of START. We trained and supervised three AS dementia support workers in different locations, to each deliver START to three family carers. Two researchers independently coded pre-intervention interviews for themes. We assessed intervention feasibility through monitoring delivery fidelity, rating audio-recordings from 1-5 (5 being high) and interviewing facilitators, family carers and AS managers about their experiences. We assessed effectiveness on family carers' mental health using the Hospital Anxiety and Depression Scale (HADS) before and after receiving START (scores 0-42). We changed START's format by reflecting carer diversity more and increasing carer stories prominence, but core content or delivery processes were unchanged. All carers received START and attended every session. The mean fidelity score was 4.2. Mean HADS-total score reduced from baseline 18.4 (standard deviation 7.4) to follow-up 15.8 (9.7). Six (67%) carers scored as clinically depressed on baseline HADS and 2 (22%) at follow-up. Facilitators and carers rated START positively. Appropriately experienced third sector workers can be trained and supervised to deliver START and it remains effective. This has the potential for widened access at scale.
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http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0250410PLOS
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8171938PMC
June 2021

Dementia wellbeing and COVID-19: Review and expert consensus on current research and knowledge gaps.

Int J Geriatr Psychiatry 2021 May 16. Epub 2021 May 16.

Division of Neuroscience and Experimental Psychology, The University of Manchester, Manchester, UK.

Objectives: In response to a commissioned research update on dementia during the COVID-19 pandemic, a UK-based working group, comprising dementia researchers from a range of fields and disciplines, aimed to describe the impact of the pandemic on dementia wellbeing and identify priorities for future research.

Methods: We supplemented a rapid literature search (including unpublished, non-peer reviewed and ongoing studies/reports) on dementia wellbeing in the context of COVID-19 with expert group members' consensus about future research needs. From this we generated potential research questions the group judged to be relevant that were not covered by the existing literature.

Results: Themes emerged from 141 studies within the six domains of the NHS England COVID-19 Dementia Wellbeing Pathway: Preventing Well, Diagnosing Well, Treating Well, Supporting Well, Living Well and Dying Well. We describe current research findings and knowledge gaps relating to the impact on people affected by dementia (individuals with a diagnosis, their carers and social contacts, health and social care practitioners and volunteers), services, research activities and organisations. Broad themes included the potential benefits and risks of new models of working including remote healthcare, the need for population-representative longitudinal studies to monitor longer-term impacts, and the importance of reporting dementia-related findings within broader health and care studies.

Conclusions: The COVID-19 pandemic has had a disproportionately negative impact on people affected by dementia. Researchers and funding organisations have responded rapidly to try to understand the impacts. Future research should highlight and resolve outstanding questions to develop evidence-based measures to improve the quality of life of people affected by dementia.
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http://dx.doi.org/10.1002/gps.5567DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8237017PMC
May 2021

Acceptance and commitment therapy for late-life treatment-resistant generalised anxiety disorder: a feasibility study.

Age Ageing 2021 Apr 13. Epub 2021 Apr 13.

Division of Psychiatry, Faculty of Brain Sciences, University College London, London, UK.

Background: Generalised anxiety disorder (GAD) is the most common anxiety disorder in older people. First-line management includes pharmacological and psychological therapies, but many do not find these effective or acceptable. Little is known about how to manage treatment-resistant generalised anxiety disorder (TR-GAD) in older people.

Objectives: To examine the acceptability, feasibility and preliminary estimates of the effectiveness of acceptance and commitment therapy (ACT) for older people with TR-GAD.

Participants: People aged ≥65 years with TR-GAD (defined as not responding to GAD treatment, tolerate it or refused treatment) recruited from primary and secondary care services and the community.

Intervention: Participants received up to 16 one-to-one sessions of ACT, developed specifically for older people with TR-GAD, in addition to usual care.

Measurements: Co-primary outcomes were feasibility (defined as recruitment of ≥32 participants and retention of ≥60% at follow-up) and acceptability (defined as participants attending ≥10 sessions and scoring ≥21/30 on the satisfaction with therapy subscale). Secondary outcomes included measures of anxiety, worry, depression and psychological flexibility (assessed at 0 and 20 weeks).

Results: Thirty-seven participants were recruited, 30 (81%) were retained and 26 (70%) attended ≥10 sessions. A total of 18/30 (60%) participants scored ≥21/30 on the satisfaction with therapy subscale. There was preliminary evidence suggesting that ACT may improve anxiety, depression and psychological flexibility.

Conclusions: There was evidence of good feasibility and acceptability, although satisfaction with therapy scores suggested that further refinement of the intervention may be necessary. Results indicate that a larger-scale randomised controlled trial of ACT for TR-GAD is feasible and warranted.
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http://dx.doi.org/10.1093/ageing/afab059DOI Listing
April 2021

Factors influencing prescription and administration of analgesic medication: A longitudinal study of people with dementia living in care homes.

Int J Geriatr Psychiatry 2021 Mar 14. Epub 2021 Mar 14.

Division of Psychiatry, University College London, London, UK.

Objectives: To (1) describe the prescription and administration of regular and 'as required' (pro re nata [PRN]) analgesics in English care homes, (2) investigate individual and care home factors associated with analgesic use.

Methods: We collected data (2014-2016) at 0-, 4-, and 12-months nested in a longitudinal cohort study of 86 English care homes about residents with diagnosed or probable dementia. We describe analgesics prescribed as regular or PRN medication, by class, and PRN administration. We explored individual differences (sociodemographic; dementia severity [Clinical Dementia Rating]), and care home differences (type; ownership; number of beds; dementia-registered/specialist; Care Quality Commission rating) in prescription and administration using multilevel regression models.

Results: Data were available for 1483 residents. At baseline, 967 residents (67.9%) were prescribed analgesics: 426 residents (28.7%) prescribed regular analgesics and 670 (45.2%) prescribed PRN. Paracetamol was the most prescribed analgesic (56.7%), with PRN prescriptions more common than regular (39.7% vs. 16.6%). Across all study visits, 344 residents (mean = 41.9%) with a PRN prescription did not receive any analgesic in the 2 weeks prior to data collection. Male residents and those with severe dementia received fewer analgesics. Care homes differences in PRN administration were not explained by the modelled variables.

Conclusions: Pain management in English care homes largely relies on PRN paracetamol that is frequently prescribed but infrequently administered. Care homes differ in how often they administer PRN analgesics. Some care home residents particularly those with more severe dementia are likely to have untreated pain.
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http://dx.doi.org/10.1002/gps.5526DOI Listing
March 2021

The Association Between Impaired Awareness and Depression, Anxiety, and Apathy in Mild to Moderate Alzheimer's Disease: A Systematic Review.

Front Psychiatry 2021 4;12:633081. Epub 2021 Feb 4.

Division of Psychiatry, University College London, London, United Kingdom.

Impaired awareness of cognitive and functional deficits is a common feature of Alzheimer's disease (AD). Although a lack of awareness has been suggested to be a protective factor against experiencing affective symptoms, such as depression, anxiety, and apathy which are common in AD, there is conflicting evidence about the links between them. This systematic review examines the evidence for an association between impaired awareness and depressive, anxiety, and apathy symptoms in mild to moderate AD. We searched four databases (OvidMedline, Embase, PsycInfo, and PsycArticles) using terms encompassing awareness, apathy, depression, anxiety, and mild-moderate AD. We included studies that assessed the relationship between awareness and depressive symptoms, anxiety symptoms, or apathy. We assessed included papers for quality and report results using a narrative approach, prioritizing high quality studies. We identified 1,544 articles, and twenty-seven studies fulfilled inclusion criteria (high-quality = 15; moderate-quality = 12). Most high-quality studies reported that impaired awareness in early-stage AD is cross-sectionally linked with fewer depressive symptoms and anxiety symptoms (correlation ranged from -0.3 to -0.7), but with more apathy. High-quality studies suggested that in people with early AD, impaired awareness is related to fewer depressive and anxiety symptoms and to more apathy. Future research should focus on elucidating causality among impaired awareness and these symptoms in AD.
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http://dx.doi.org/10.3389/fpsyt.2021.633081DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7889585PMC
February 2021

Long-term implementation of the Managing Agitation and Raising QUality of lifE intervention in care homes: A qualitative study.

Int J Geriatr Psychiatry 2021 Aug 12;36(8):1252-1263. Epub 2021 Mar 12.

Department of Mental Health of Older People, Division of Psychiatry, University College London, London, UK.

Objectives: The dementia care home workforce receives little specific training. There are successful interventions, improving care outcomes, but it is unclear whether or how to sustain these effects. The Managing Agitation and Raising Quality of Life (MARQUE) intervention aimed to train care home staff to reduce resident agitation and improve quality of life. It was designed for sustainability, with implementation plans agreed with managers. MARQUE improves quality of life. In this separate study, we aimed to examine implementation around 2 years later.

Methods And Design: We explored practice change since the intervention and considered current implementation of home-specific action plans, enablers or barriers, and perceived benefits or harms of implementation using semi-structured interviews with staff working in the trial homes who received the MARQUE intervention.

Results: Six out of 10 intervention homes participated. We interviewed 25 staff, 20-30 months after the MARQUE study. In all homes, staff reported that at least one MARQUE component was sustained. Three themes emerged about sustained practice change: (i) communication, (ii) respect and understanding of roles, and (iii) ability to try new things. Notable changes included improved team working and feelings of competence, positive attitude to residents rather than blame for agitation and avoidance, and more pleasant activities. Leadership support was important.

Conclusions: It is possible to sustain some change over years in care homes. This study indicates factors which help or impede. These factors individually and together could lead to long-term improved quality of life of residents in homes where it is implemented and sustained.
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http://dx.doi.org/10.1002/gps.5519DOI Listing
August 2021

A National Memory Clinic Survey to Assess Provision for People from Diverse Ethnic Backgrounds in England and Wales.

Int J Environ Res Public Health 2021 02 4;18(4). Epub 2021 Feb 4.

Division of Psychiatry, Faculty of Brain Sciences, University College London, Gower Street, London WC1E 6BT, UK.

English national guidelines regarding dementia assessment and management recommend consideration of cultural and linguistic diversity when assessing people with cognitive complaints. To date there has been no assessment of adherence to these guidelines. We aimed to assess whether current services provided in memory assessment services (MAS) adhere to national policy, in their approach to the assessment and management of individuals with memory problems from minority ethnic backgrounds. We sent a survey to 213 memory services in England and Wales. Twenty MAS from seven regions responded to the survey. We found that 80% (16) provided translated resources, 70% (14) used cognitive assessment tools that are culturally sensitive and appropriate, and 65% (13) showed good use of sufficiently skilled and knowledgeable interpreters. Communication barriers, particularly language, were raised as a potential obstacle to diagnosing minority ethnic patients. Memory clinics appear to reflect national policy for the assessment and management of memory problems in minority ethnic patients. However, only a minority of services responded and they may be more engaged in considering these populations. We need wider knowledge of practice to explore how guidelines support healthcare professional's assessment of patients from minority ethnic groups in memory service diagnostic procedures.
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http://dx.doi.org/10.3390/ijerph18041456DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7913949PMC
February 2021

Social relationships and depression during the COVID-19 lockdown: longitudinal analysis of the COVID-19 Social Study.

Psychol Med 2021 Jan 13:1-10. Epub 2021 Jan 13.

Department of Behavioural Science and Health, University College London, London, UK.

Background: The coronavirus disease 2019 (COVID-19) pandemic led to measures that reduced social contact and support. We explored whether UK residents with more frequent or supportive social contact had fewer depressive symptoms during March-August 2020, and potential factors moderating the relationship.

Methods: A convenience sample of UK dwelling participants aged ⩾18 in the internet-based longitudinal COVID-19 Social Study completed up to 22 weekly questionnaires about face-to-face and phone/video social contact frequency, perceived social support, and depressive symptoms using the PHQ-9. Mixed linear models examined associations between social contact and support, and depressive symptoms. We examined for interaction by empathic concern, perspective taking and pre-COVID social contact frequency.

Results: In 71 117 people with mean age 49 years (standard deviation 15), those with high perceived social support scored 1.836 (1.801-1.871) points lower on PHQ-9 than those with low support. Daily face-to-face or phone/video contact was associated with lower depressive symptoms (0.258 (95% confidence interval 0.225-0.290) and 0.117 (0.080-0.154), respectively) compared to no contact. The negative association between social relationships and depressive symptoms was stronger for those with high empathic concern, perspective taking and usual sociability.

Conclusions: We found during lockdown that those with higher quality or more face-to-face or phone/video contact had fewer depressive symptoms. Contact quality was more strongly associated than quantity. People who were usually more sociable or had higher empathy had more depressive symptoms during enforced reduced contact. The results have implications for COVID-19 and potential future pandemic management, and for understanding the relationship between social factors and mental health.
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http://dx.doi.org/10.1017/S0033291721000039DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7844174PMC
January 2021

Current and Future Prevalence Estimates of Mild Cognitive Impairment, Dementia, and Its Subtypes in a Population-Based Sample of People 70 Years and Older in Norway: The HUNT Study.

J Alzheimers Dis 2021 ;79(3):1213-1226

Norwegian National Advisory Unit on Ageing and Health, Vestfold Hospital Trust, Tønsberg, Norway.

Background: Having accurate, up-to-date information on the epidemiology of mild cognitive impairment (MCI) and dementia is imperative.

Objective: To determine the prevalence of MCI and dementia in Norway using data from a large population-based study.

Methods: All people 70 + years of age, n = 19,403, in the fourth wave of the Trøndelag Health Study (HUNT4) were invited to participate in the study HUNT4 70 + . Trained health personnel assessed participants using cognitive tests at a field station, at homes, or at their nursing home. Interviewers also completed a structured carer questionnaire in regard to participants suspected of having dementia. Clinical experts made diagnoses according to DSM-5 criteria. We calculated prevalence weighing the data to ensure population representativeness.

Results: A total of 9,930 (51.2%) of the possible 19,403 people participated, and 9,663 of these had sufficient information for analysis. Standardized prevalence of dementia and MCI was 14.6% (95% confidence interval (CI) 13.9-15.4) and 35.3% (95% CI 34.3-36.4), respectively. Dementia was more prevalent in women and MCI more prevalent in men. The most prevalent dementia subtype was Alzheimer's disease (57%). By adding data collected from a study of persons < 70 years in the same region, we estimate that there are 101,118 persons with dementia in Norway in 2020, and this is projected to increase to 236,789 and 380,134 in 2050 and 2100, respectively.

Conclusion: We found a higher prevalence of dementia and MCI than most previous studies. The present prevalence and future projections are vital for preparing for future challenges to the healthcare system and the entire society.
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http://dx.doi.org/10.3233/JAD-201275DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7990439PMC
January 2021

Implementation should now be considered in parallel with designing clinical research.

Int Psychogeriatr 2020 12;32(12):1393-1395

Division of Psychiatry, University College London, London, UK.

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http://dx.doi.org/10.1017/S1041610220001064DOI Listing
December 2020

A mixed-methods feasibility study of a goal-focused manualised intervention to support people with dementia to stay living independently at home with support from family carers: NIDUS (New Interventions for Independence in Dementia Study) Family.

Aging Ment Health 2021 Aug 23;25(8):1463-1474. Epub 2020 Nov 23.

Division of Psychiatry, UCL , London , United Kingdom of Great Britain and Northern Ireland.

Objectives: To examine the feasibility and acceptability of NIDUS-Family, a 6-8 session manualised, individually tailored, modular intervention supporting independence at home for people with dementia; and explore participants' and facilitators' experiences of the intervention.

Method: In this single group multi-site feasibility study, trained, supervised non-clinically qualified graduates (facilitators) delivered NIDUS-Family to family carer and people living with dementia dyads. We recruited participants from GP practices and memory services in London and Bradford. We completed quantitative outcomes pre- and post-intervention; and conducted qualitative interviews with participants and facilitators. Our pre-specified main outcomes were proportion of potential participants approached who agreed to participate, intervention adherence and acceptability to family carers, and facilitator fidelity to the manual.

Results: We recruited 16 dyads (57% of those approached); 12 (75%) completed the intervention. Of 12 participants rating intervention acceptability, 9 (75%) agreed or strongly agreed that it had helped; 2 (18%) neither agreed nor disagreed and 1 (8%) disagreed. Mean facilitator fidelity was high (81.5%). Dyads set on average 3.9 goals; these most commonly related to getting out and about and increasing activity/hobby participation ( = 10); carer wellbeing ( = 6), managing physical complaints ( = 6); meal preparation/cooking ( = 5); and reducing irritability, frustration or aggression ( = 5). Almost all secondary outcomes changed in a direction indicating improvement. In our qualitative analysis we identified three overarching themes; relationships facilitate change, goal-focused versus manualised approach and balancing the needs of carers and people with dementia.

Conclusion: NIDUS-Family was feasible and acceptable to participants. Following refinements, testing in a pragmatic trial is underway.
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http://dx.doi.org/10.1080/13607863.2020.1845299DOI Listing
August 2021

Leisure activity participation and risk of dementia: An 18-year follow-up of the Whitehall II Study.

Neurology 2020 11 28;95(20):e2803-e2815. Epub 2020 Oct 28.

From the Division of Psychiatry (A.S., G. Livingston, G. Lewis) and Department of Epidemiology and Public Health (S.S., M.K., A.-S.M.), University College London; Camden and Islington NHS Foundation Trust (A.S., G. Livingston, G. Lewis), London, UK; Université de Paris (S.S., A.-S.M.), Inserm U1153, Epidemiology of Ageing and Neurodegenerative Diseases, France; and Clinicum and Helsinki Institute of Life Science (M.K.), University of Helsinki, Finland.

Objective: To test the hypothesis that leisure activity participation is associated with lower dementia risk, we examined the association between participation in leisure activities and incident dementia in a large longitudinal study with average 18-year follow-up.

Methods: We used data from 8,280 participants of the Whitehall II prospective cohort study. A 13-item scale assessed leisure activity participation in 1997-1999, 2002-2004, and 2007-2009, and incidence of dementia (n cases = 360, mean age at diagnosis 76.2 years, incidence rate 2.4 per 1,000 person-years) was ascertained from 3 comprehensive national registers with follow-up until March 2017. Primary analyses were based on complete cases (n = 6,050, n cases = 247) and sensitivity analyses used multiple imputation for missing data.

Results: Participation in leisure activities at mean age 55.8 (1997-1999 assessment), with 18.0-year follow-up, was not associated with dementia (hazard ratio [HR] 0.92 [95% confidence interval 0.79-1.06]), but those with higher participation at mean age 65.7 (2007-2009 assessment) were less likely to develop dementia with 8.3-year follow-up (HR 0.82 [0.69-0.98]). No specific type of leisure activity was consistently associated with dementia risk. Decline in participation between 1997-1999 and 2007-2009 was associated with subsequent dementia risk.

Conclusion: Our findings suggest that participation in leisure activities declines in the preclinical phase of dementia; there was no robust evidence for a protective association between leisure activity participation and dementia. Future research should investigate the sociobehavioral, cognitive, and neurobiological drivers of decline in leisure activity participation to determine potential approaches to improving social participation of those developing dementia.
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http://dx.doi.org/10.1212/WNL.0000000000010966DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7734721PMC
November 2020

Evaluation of START (STrAtegies for RelaTives) adapted for carers of people with Lewy body dementia.

Future Healthc J 2020 Oct;7(3):e27-e29

University College London, London, UK.

Family carers of people with Lewy body dementia (LBD) have a particularly high burden of care, as LBD has a faster rate of decline, greater physical dependence and additional neuropsychiatric disturbances compared with other dementias. Despite this, there are no evidence-based support services designed specifically for LBD carers. STrAtegies for RelaTives (START) is an eight-session, individually delivered coping therapy that has been shown in a randomised controlled trial to reduce depression and anxiety symptoms and increase quality of life in carers of people with dementia, with effects lasting several years. We adapted START for LBD, and piloted its use both face-to-face and on the phone with 10 carers to test acceptability and indications of similar effects in this group. Our findings suggest that the therapy was acceptable and feasible using either delivery mode, providing much appreciated and needed strategies, education and support for carers of people with LBD. Trials of effectiveness are now needed.
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http://dx.doi.org/10.7861/fhj.2020-0003DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7571743PMC
October 2020

Prevalence, management, and outcomes of SARS-CoV-2 infections in older people and those with dementia in mental health wards in London, UK: a retrospective observational study.

Lancet Psychiatry 2020 12 5;7(12):1054-1063. Epub 2020 Oct 5.

Primary Care and Population Health, Institute of Epidemiology and Health, Faculty of Population Health Sciences, University College London, London, UK.

Background: People living in group situations or with dementia are more vulnerable to infection with severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2). Older people and those with multimorbidity have higher mortality if they become infected than the general population. However, no systematic study exists of COVID-19-related outcomes in older inpatients in psychiatric units, who comprise people from these high-risk groups. We aimed to describe the period prevalence, demographics, symptoms (and asymptomatic cases), management, and survival outcomes of COVID-19 in the older inpatient psychiatric population and people with young-onset dementia in five National Health Service Trusts in London, UK, from March 1 to April 30, 2020.

Methods: In this retrospective observational study, we collected demographic data, mental health diagnoses, clinical diagnosis of COVID-19, symptoms, management, and COVID-19-related outcome data of inpatients aged 65 years or older or with dementia who were already inpatients or admitted as inpatients to five London mental health Trusts between March 1 and April 30, 2020, and information about available COVID-19-related resources (ie, testing and personal protective equipment). Patients were determined to have COVID-19 if they had a positive SARS-CoV-2 PCR test, or had relevant symptoms indicative of COVID-19, as determined by their treating physician. We calculated period prevalence of COVID-19 and analysed patients' characteristics, treatments, and outcomes.

Findings: Of 344 inpatients, 131 (38%) were diagnosed with COVID-19 during the study period (period prevalence 38% [95% CI 33-43]). The mean age of patients who had COVID-19 was 75·3 years (SD 8·2); 68 (52%) were women and 47 (36%) from ethnic minority groups. 16 (12%) of 131 patients were asymptomatic and 121 (92%) had one or more disease-related comorbidity. 108 (82%) patients were compulsorily detained. 74 (56%) patients had dementia, of whom 13 (18%) had young-onset dementia. On average, sites received COVID-19 testing kits 4·5 days after the first clinical COVID-19 presentation. 19 (15%) patients diagnosed with COVID-19 died during the study period, and their deaths were determined to be COVID-19 related.

Interpretation: Patients in psychiatric inpatient settings who were admitted without known SARS-CoV-2 infection had a high risk of infection with SARS-CoV-2 compared with those in the community and had a higher proportion of deaths from COVID-19 than in the community. Implementation of the long-standing policy of parity of esteem for mental health and planning for future COVID-19 waves in psychiatric hospitals is urgent.

Funding: None.
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http://dx.doi.org/10.1016/S2215-0366(20)30434-XDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7535621PMC
December 2020

Development, feasibility, and acceptability of an intervention to improve care for agitation in people living in nursing homes with dementia nearing the end-of-life.

Int Psychogeriatr 2020 Sep 15:1-13. Epub 2020 Sep 15.

Department of Old Age Psychiatry, Division of Psychiatry, University College London, Maple House, 149 Tottenham Court Road, LondonW1T 7NF, UK.

Objectives: To develop a staff training intervention for agitation in people with severe dementia, reaching end-of-life, residing in nursing homes (NHs), test feasibility, acceptability, and whether a trial is warranted.

Design: Feasibility study with pre- and post-intervention data collection, qualitative interviews, and focus groups.

Setting: Three NHs in South East England with dementia units, diverse in terms of size, ownership status, and location.

Participants: Residents with a dementia diagnosis or scoring ≥2 on the Noticeable Problems Checklist, rated as "severe" on Clinical Dementia Rating Scale, family carers, and staff (healthcare assistants and nurses).

Intervention: Manualized training, delivered by nonclinical psychology graduates focusing on agitation in severe dementia, underpinned by a palliative care framework.

Measurements: Main outcomes were feasibility of recruitment, data collection, follow-up, and intervention acceptability. We collected resident, family carer, and staff demographics. Staff provided data on resident's agitation, pain, quality of life, and service receipt. Staff reported their sense of competence in dementia care. Family carers reported on satisfaction with end-of-life care. In qualitative interviews, we explored staff and family carers' views on the intervention.

Results: The target three NHs participated: 28 (49%) residents, 53 (74%) staff, and 11 (85%) family carers who were eligible to participate consented. Eight-four percent of staff attended ≥3 sessions, and we achieved 93% follow-up. We were able to complete quantitative interviews. Staff and family carers reported the intervention and delivery were acceptable and helpful.

Conclusions: The intervention was feasible and acceptable indicating a larger trial for effectiveness may be warranted.
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http://dx.doi.org/10.1017/S1041610220001647DOI Listing
September 2020

Association of Alcohol-Induced Loss of Consciousness and Overall Alcohol Consumption With Risk for Dementia.

JAMA Netw Open 2020 09 1;3(9):e2016084. Epub 2020 Sep 1.

Clinicum, Faculty of Medicine, University of Helsinki, Helsinki, Finland.

Importance: Evidence on alcohol consumption as a risk factor for dementia usually relates to overall consumption. The role of alcohol-induced loss of consciousness is uncertain.

Objective: To examine the risk of future dementia associated with overall alcohol consumption and alcohol-induced loss of consciousness in a population of current drinkers.

Design, Setting, And Participants: Seven cohort studies from the UK, France, Sweden, and Finland (IPD-Work consortium) including 131 415 participants were examined. At baseline (1986-2012), participants were aged 18 to 77 years, reported alcohol consumption, and were free of diagnosed dementia. Dementia was examined during a mean follow-up of 14.4 years (range, 12.3-30.1). Data analysis was conducted from November 17, 2019, to May 23, 2020.

Exposures: Self-reported overall consumption and loss of consciousness due to alcohol consumption were assessed at baseline. Two thresholds were used to define heavy overall consumption: greater than 14 units (U) (UK definition) and greater than 21 U (US definition) per week.

Main Outcomes And Measures: Dementia and alcohol-related disorders to 2016 were ascertained from linked electronic health records.

Results: Of the 131 415 participants (mean [SD] age, 43.0 [10.4] years; 80 344 [61.1%] women), 1081 individuals (0.8%) developed dementia. After adjustment for potential confounders, the hazard ratio (HR) was 1.16 (95% CI, 0.98-1.37) for consuming greater than 14 vs 1 to 14 U of alcohol per week and 1.22 (95% CI, 1.01-1.48) for greater than 21 vs 1 to 21 U/wk. Of the 96 591 participants with data on loss of consciousness, 10 004 individuals (10.4%) reported having lost consciousness due to alcohol consumption in the past 12 months. The association between loss of consciousness and dementia was observed in men (HR, 2.86; 95% CI, 1.77-4.63) and women (HR, 2.09; 95% CI, 1.34-3.25) during the first 10 years of follow-up (HR, 2.72; 95% CI, 1.78-4.15), after excluding the first 10 years of follow-up (HR, 1.86; 95% CI, 1.16-2.99), and for early-onset (<65 y: HR, 2.21; 95% CI, 1.46-3.34) and late-onset (≥65 y: HR, 2.25; 95% CI, 1.38-3.66) dementia, Alzheimer disease (HR, 1.98; 95% CI, 1.28-3.07), and dementia with features of atherosclerotic cardiovascular disease (HR, 4.18; 95% CI, 1.86-9.37). The association with dementia was not explained by 14 other alcohol-related conditions. With moderate drinkers (1-14 U/wk) who had not lost consciousness as the reference group, the HR for dementia was twice as high in participants who reported having lost consciousness, whether their mean weekly consumption was moderate (HR, 2.19; 95% CI, 1.42-3.37) or heavy (HR, 2.36; 95% CI, 1.57-3.54).

Conclusions And Relevance: The findings of this study suggest that alcohol-induced loss of consciousness, irrespective of overall alcohol consumption, is associated with a subsequent increase in the risk of dementia.
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http://dx.doi.org/10.1001/jamanetworkopen.2020.16084DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7489835PMC
September 2020

The minimum clinically important difference on the sleep disorders inventory for people with dementia.

Int J Geriatr Psychiatry 2020 11 11;35(11):1418-1423. Epub 2020 Sep 11.

Division of Psychiatry, Faculty of Brain Sciences, UCL, Maple House, London, UK.

Objectives: Sleep disturbances in dementia causes distress to people with dementia and their family carers and are associated with care home admission. The Sleep Disorders Inventory (SDI) is a validated questionnaire of sleep disturbances in dementia often used to measure treatment effectiveness, but the minimum clinically important difference (MCID) is unknown.

Methods: We triangulated three investigative methods to determine the MCID of the SDI. Using data on SDI from a randomised controlled trial (RCT) with 62 participants in an intervention for sleep disorders in dementia, we (1) calculated distribution-based values where MCID = 0.33 of a SD (SD) (2) an anchor based approach using quality of life (measured using DEMQOL-Proxy) as an anchor. We also employed a Delphi consensus process asking 12 clinicians, sleep researchers and family carers to rate which changes on vignettes were equivalent to a MCID.

Results: We found that 0.33 SD in the SDI = 4.86. Reduction in SDI total score was not significantly correlated with improvement in DEMQOL-Proxy (Pearson's correlation = -0.01; P = 0.96) score. The Delphi consensus required two rounds to reach a consensus and concluded that changes equivalent to three points on the SDI equated to the MCID.

Conclusions: Taking into account both the distribution-based values and the Delphi process we used a whole number at the midpoint and judged the minimum clinically important difference MCID to be equal to four points. We note the clinicians and carers opinions from the Delphi process determined the MCID to be lower at three points.
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http://dx.doi.org/10.1002/gps.5384DOI Listing
November 2020

One third of dementia cases can be prevented within the next 25 years by tackling risk factors. The case "for" and "against".

Alzheimers Res Ther 2020 07 8;12(1):81. Epub 2020 Jul 8.

Division of Psychiatry, University College London, London, UK.

Background: Recently, it has been suggested that up to a third of the dementia cases might be preventable. While prevention is always better than cure, this is particularly important in the field of dementia, as current interventions are not able to modify the disease. This article revises the evidence "for" and "against" dementia primary prevention.

Discussion: Evidence "for" is sustained by the Lancet Commission on Dementia Prevention, Intervention and Care that noted a reduction of age-related incidence of dementia in high-income countries. Based on results from large cohort studies and using population attributable risk, the commission concluded that up to 35% of dementia cases could be prevented by modifying nine risk factors: low education, midlife hearing loss, obesity, hypertension, late-life depression, smoking, physical inactivity, diabetes, and social isolation. In this life course conceptual framework, modifications of risk factors can influence dementia decades before clinical disease onset. However, evidence "against" is supported by large randomized controlled trials (RCT, > 250 participants per arm, minimum of 6 months follow-up), primarily set to prevent dementia using lifestyle interventions that have shown modest or negative results. The 2017 National Academy of Medicine report concluded that the current evidence is limited and there are no specific interventions to warrant a public health recommendation for dementia prevention. Multiple pathological pathways are involved in the development of dementia which are theoretically treatable by managing midlife hearing loss and hypertension, and with physical exercise and education, as suggested by robust observational studies. However, evidence from large clinical trials is not conclusive to support that a third of dementia cases might be prevented. Current initiatives testing the effect of lifestyle interventions in larger clinical trials may help to settle this debate.
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http://dx.doi.org/10.1186/s13195-020-00646-xDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7346354PMC
July 2020

Becoming or Remaining Agitated: The Course of Agitation in People with Dementia Living in Care Homes. The English Longitudinal Managing Agitation and Raising Quality of Life (MARQUE) Study.

J Alzheimers Dis 2020 ;76(2):467-473

Department of Old Age Psychiatry, Division of Psychiatry, University College London, London, UK.

Care home residents with dementia often have accompanying agitation. We investigated agitation's course at 5 time-points in 1,424 people with dementia over 16 months in 86 English care homes. We categorized baseline agitation symptoms on the Cohen-Mansfield Agitation Inventory (CMAI) into none (CMAI = 29; 15%), subclinical (CMAI = 30-45; 45%), or clinically-significant (CMAI > 45; 40%). 88% of those with no agitation at baseline remained free of clinically-significant agitation at all follow-ups. Seventy percent of those exhibiting clinically-significant agitation at baseline had clinically-significant agitation at some follow-ups. Over a 16-month observation period, this study finds many care home residents with dementia never develop clinically significant agitation and interventions should be for treatment not prevention.
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http://dx.doi.org/10.3233/JAD-191195DOI Listing
May 2021

The impact of sleep disturbances on care home residents with dementia: the SIESTA qualitative study.

Int Psychogeriatr 2020 07;32(7):839-847

Division of Psychiatry, UCL, London, UK.

Objectives: Nearly 40% of care home residents who are living with dementia also have symptoms of disturbed sleep. However, the impact of these disturbances is relatively unknown and is needed to indicate whether interventions are warranted; therefore, we aimed to investigate the impact.

Design: One-to-one semi-structured interviews.

Settings: Four UK care homes.

Participants: We interviewed 18 nurses and care assistants about residents with sleep disturbances.

Measurements: We used a topic guide to explore staff experience of sleep disturbance in residents with dementia. The interviews were audio recorded and transcribed and then analyzed thematically by two researchers independently.

Results: Staff described that sleep disturbances in most, but not all, residents impacted negatively on the resident, other residents, staff, and relatives. Residents became more irritable or agitated if they had slept badly. They slept in the daytime after a bad night, which then increased their chances of being awake the following night. For some, being sleepy in the day led to falls, missing medication, drinks, and meals. Staff perceived hypnotics as having low efficacy, but increasing the risk of falls and drowsiness. Other residents were disturbed by noise, and staff described stress when several residents had sleep disturbance. Some of the strategies reported by staff to deal with sleep disturbances such as feeding or providing caffeinated tea at night might be counterproductive.

Conclusions: Sleep disturbances in care home residents living with dementia negatively affect their physical and psychological well-being. These disturbances also disturb other residents and increase stress in staff.
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http://dx.doi.org/10.1017/S1041610220000642DOI Listing
July 2020

Acceptability and feasibility of a Japanese version of STrAtegies for RelaTives (START-J): A manualized coping strategy program for family caregivers of relatives living with dementia.

Dementia (London) 2021 Apr 23;20(3):985-1004. Epub 2020 Apr 23.

Division of Psychiatry, University College London, London, UK; Camden and Islington NHS Foundation Trust, London, UK.

The rising older population in Japan is associated with a rise in cases of dementia. Support for the increased number of family caregivers of people living with dementia is crucial, as caring may negatively affect a family caregiver's health. This study seeks to evaluate the feasibility and applicability of a recently developed Japanese version of START (STrAtegies for RelaTives). START is a psychosocial coping intervention program developed in the United Kingdom that has been shown to improve caregivers' mood and quality of life in a randomized controlled trial. We made changes to START (e.g., idioms, linguistic nuance, and providing care insurance information suited for Japan) to make it culturally appropriate. Fourteen Japanese female family caregivers of relatives with mild dementia (n = 10) or mild cognitive impairment (n = 4) were referred to the study, but six were excluded owing to illness and busyness. This single-arm study had a before-after trial evaluating psychological outcomes including depression, anxiety, quality of life, and subjective care burden. The acceptance retention and satisfaction rate suggest the feasibility and acceptability of the START program; 8/14 (>55%) eligible, prospective participants consented and were included in this study, all (8/8) of whom completed all START sessions. The mean program satisfaction score was 30.25 (standard deviation = 2.25) out of a potential 32. The results suggest that it is feasible and acceptable to deliver START in Japanese and based on the results of analysis using a linear mixed model, there is initial indication that the intervention improved family caregivers' quality of life, depressive symptoms, and care burden.
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http://dx.doi.org/10.1177/1471301220919938DOI Listing
April 2021

Time to invest in prevention and better care of behaviors and psychological symptoms associated with dementia.

Int Psychogeriatr 2020 Mar 31:1-6. Epub 2020 Mar 31.

Dementia Centre for Research Collaboration, University of New South Wales, Sydney, Australia.

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http://dx.doi.org/10.1017/S104161022000037XDOI Listing
March 2020

Experiences of hearing aid use among patients with mild cognitive impairment and Alzheimer's disease dementia: A qualitative study.

SAGE Open Med 2020 3;8:2050312120904572. Epub 2020 Mar 3.

Division of Psychiatry, University College London, London, UK.

Objectives: Hearing aid usage supports communication and independence; however, many do not use their hearing aids. This study explored the experiences of hearing aid use in adults with mild cognitive impairment or Alzheimer's disease.

Methods: Participants completed semi-structured interviews which were analysed using thematic analysis. Ten people (six males, age range 75-86 years old) with mild cognitive impairment or Alzheimer's disease who had been fitted with hearing aids were recruited to the study.

Results: We identified four major themes: (1) memory and other cognitive barriers to using hearing aids, (2) practical aspects of hearing aids, (3) benefits of hearing aids, and (4) ambivalence towards hearing aids.

Conclusions: Participants perceived a significant impact of cognitive impairment on the experience of using hearing aids. This population may benefit from targeted strategies to support use of hearing aids. The findings from this study can inform future research to optimise use of hearing aids in this population.
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http://dx.doi.org/10.1177/2050312120904572DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7054731PMC
March 2020

Minocycline at 2 Different Dosages vs Placebo for Patients With Mild Alzheimer Disease: A Randomized Clinical Trial.

JAMA Neurol 2020 02;77(2):164-174

Nuffield Department of Population Health, University of Oxford, Oxford, United Kingdom.

Importance: There are no disease-modifying treatments for Alzheimer disease (AD), the most common cause of dementia. Minocycline is anti-inflammatory, protects against the toxic effects of β-amyloid in vitro and in animal models of AD, and is a credible repurposed treatment candidate.

Objective: To determine whether 24 months of minocycline treatment can modify cognitive and functional decline in patients with mild AD.

Design, Setting, And Participants: Participants were recruited into a double-blind randomized clinical trial from May 23, 2014, to April 14, 2016, with 24 months of treatment and follow-up. This multicenter study in England and Scotland involved 32 National Health Service memory clinics within secondary specialist services for people with dementia. From 886 screened patients, 554 patients with a diagnosis of mild AD (Standardised Mini-Mental State Examination [sMMSE] score ≥24) were randomized.

Interventions: Participants were randomly allocated 1:1:1 in a semifactorial design to receive minocycline (400 mg/d or 200 mg/d) or placebo for 24 months.

Main Outcomes And Measures: Primary outcome measures were decrease in sMMSE score and Bristol Activities of Daily Living Scale (BADLS), analyzed by intention-to-treat repeated-measures regression.

Results: Of 544 eligible participants (241 women and 303 men), the mean (SD) age was 74.3 (8.2) years, and the mean (SD) sMMSE score was 26.4 (1.9). Fewer participants completed 400-mg minocycline hydrochloride treatment (28.8% [53 of 184]) than 200-mg minocycline treatment (61.9% [112 of 181]) or placebo (63.7% [114 of 179]; P < .001), mainly because of gastrointestinal symptoms (42 in the 400-mg group, 15 in the 200-mg group, and 10 in the placebo group; P < .001), dermatologic adverse effects (10 in the 400-mg group, 5 in the 200-mg group, and 1 in the placebo group; P = .02), and dizziness (14 in the 400-mg group, 3 in the 200-mg group, and 1 in the placebo group; P = .01). Assessment rates were lower in the 400-mg group: 68.4% (119 of 174 expected) for sMMSE at 24 months compared with 81.8% (144 of 176) for the 200-mg group and 83.8% (140 of 167) for the placebo group. Decrease in sMMSE scores over 24 months in the combined minocycline group was similar to that in the placebo group (4.1 vs 4.3 points). The combined minocycline group had mean sMMSE scores 0.1 points higher than the placebo group (95% CI, -1.1 to 1.2; P = .90). The decrease in mean sMMSE scores was less in the 400-mg group than in the 200-mg group (3.3 vs 4.7 points; treatment effect = 1.2; 95% CI, -0.1 to 2.5; P = .08). Worsening of BADLS scores over 24 months was similar in all groups: 5.7 in the 400-mg group, 6.6 in the 200-mg group, and 6.2 in the placebo groups (treatment effect for minocycline vs placebo = -0.53; 95% CI, -2.4 to 1.3; P = .57; treatment effect for 400 mg vs 200 mg of minocycline = -0.31; 95% CI, -0.2 to 1.8; P = .77). Results were similar in different patient subgroups and in sensitivity analyses adjusting for missing data.

Conclusions And Relevance: Minocycline did not delay the progress of cognitive or functional impairment in people with mild AD during a 2-year period. This study also found that 400 mg of minocycline is poorly tolerated in this population.

Trial Registration: isrctn.org Identifier: ISRCTN16105064.
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http://dx.doi.org/10.1001/jamaneurol.2019.3762DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6865324PMC
February 2020

Burnout in UK care home staff and its effect on staff turnover: MARQUE English national care home longitudinal survey.

Age Ageing 2019 12;49(1):74-81

Division of Psychiatry, University College London, London W1T 7NF, UK.

Background: staff burnout and turnover lead to care home residents receiving poorer quality care. Burnout is thought to cause turnover, but this has never been investigated. We know little about which care home staffs are burnt out.

Aims: to explore burnout's relationship with staff turnover and prevalence and predictors of burnout.

Method: we calculated the relationship between Maslach Burnout Inventory scores and future staff turnover (12-month number of staff leaving/number employed). We explored staff, resident and care home predictors of burnout, measured as emotional exhaustion (EE), depersonalisation (DP) and personal accomplishment (PA).

Results: two-thousand sixty-two care staff in 97 care home units participated. Median yearly staff turnover was 22.7%, interquartile range (IQR) 14.0-37.7%. Care staff recorded low median burnout (median EE: 14, IQR: 7-22; DP: 1, IQR: 0-5; PA 42, IQR: 36-45). We found no association between staff burnout and turnover rate. Younger staff age was associated with higher burnout (EE coefficient - 0.09; 95% confidence interval (CI): -0.13, -0.05; DP -0.02; 95% CI: -0.04, -0.01; PA 0.05; 95% CI: 0.02, 0.08). Speaking English as a second language predicted higher EE (1.59; 95% CI: 0.32, 2.85), males had higher DP (0.02; 95% CI: 0.01, 0.04) and staff working only night shifts lower PA (-2.08; 95% CI: -4.05, -1.30).

Conclusions: we found no association between care homes staff burnout level and staff turnover rates. It is a myth that burnout levels are high. Interventions for burnout could focus on at-risk groups. Future studies could consider turnover at an individual level.
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http://dx.doi.org/10.1093/ageing/afz118DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6939288PMC
December 2019

'I know they are not trained in dementia': Addressing the need for specialist dementia training for home care workers.

Health Soc Care Community 2020 03 23;28(2):475-484. Epub 2019 Oct 23.

National Ageing Research Institute, Parkville, Vic., Australia.

Global population ageing has meant a rapid increase in the numbers of older people with dementia, most of whom live in their own homes. Staying at home is an important determinant of health and well-being. As care needs increase, the quality of community support which older people receive directly influences their capacity to remain in their own homes. While many are supported informally by family carers, formal support provided by home care workers often enables them to remain at home for longer period. However, providing community-based care for people with dementia can be challenging. Workers often lack training in dementia-specific care for clients with increasingly complex needs, and typically work without direct supervision. As the demand for person-centred home care for people with dementia increases, specialist dementia training for home care workers is urgently needed. In this qualitative study, we used in-depth interviews of a purposive sample, comprising 15 family carers and four older people with dementia, to understand the experience of receiving community care. Data analysis was guided by Braun and Clarke's approach to thematic analysis and revealed the following five overlapping themes, relating to home care workers' understanding of dementia, person-centred care, communication and rapport, mutual collaboration, and the influence of organisational constraints on continuity of care. Although participants acknowledged that service providers operated under challenging circumstances, they were frustrated with home care workers' lack of dementia knowledge and inconsistent staff rostering. Conversely, an understanding of the lived experience of dementia, effective communication and rapport, and continuity of care contributed significantly to a positive experience of receiving care. The findings of this study will be used to inform the essential elements of a training program aimed at enabling and empowering a skilled, specialist home care workforce to support older people with dementia to live well at home for as long as possible.
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http://dx.doi.org/10.1111/hsc.12880DOI Listing
March 2020
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