Search

Aim: The aim of this qualitative study was to explore the barriers and facilitators to accessing and receiving mental health care for paid and unpaid carers of older adults. Methods: Unpaid and paid carers for older adults in England were interviewed remotely between May and December 2022. Participants were asked about their experiences of mental health needs and support. Reflexive thematic analysis was used to analyse the data. Results: Thirty‐seven carers participated (npaid = 9; nunpaid = 28), with the majority caring for a parent with dementia. Thematic analysis generated four themes: lack of healthcare support, social care system failing to enable time off, personal barriers and unsupportive work culture. Healthcare professionals failed to provide any link to mental health services, including when a dementia diagnosis was received. Structural and organisational barriers were evidenced by carers being unable to take time off from their unpaid caring duties or paid caring role, due to an absence of social care support for their relative. Conclusions: This is the first study to have explored the barriers to mental health care and support for paid and unpaid carers for older adults and suggests that structural, organisational and personal barriers cause severe difficulties in accessing required support to care for older relatives, services users and residents. Public Involvement: Two unpaid carers aided with the development of topic guides, data analysis, interpretation and dissemination. Both were supported and trained to code anonymised transcripts. [ABSTRACT FROM AUTHOR]

Background: Mental health services are scarce in low- and middle-income countries (LMICs), and designing and implementing effective interventions can be difficult. The aim of this international study was to explore the key lessons for developing, implementing, and evaluating community-based mental health and well-being interventions in LMICs, with an additional focus on older adults. Methods: Research and clinical experts in developing and implementing psychosocial community-based interventions in LMICs were interviewed remotely between October 2021 and January 2022. Participants were recruited via existing global health networks and via published literature searches. Participants were asked about their experiences of developing and implementing interventions, and about key barriers and facilitators during the process. Interviews lasted up to 45 min, and data were analysed using combined inductive and deductive thematic analysis. Results: Sixteen global mental health experts participated. Five themes with different sub-themes were generated: Mechanisms and contexts; Barriers; Facilitators; Public and stakeholder involvement; Looking through an ageing lens. The development and delivery of mental health interventions in LMICs are facilitated through integration into existing health infrastructures and working with existing job roles as delivery agents. Public and stakeholder involvement are crucial at all stages of development through to implementation to focus on meeting local needs and sustaining participant motivation. Logistical barriers of transport, resources, and location need to be addressed, emphasising local sustainability. Conclusions: This study provides important insights for how the development, implementation, and evaluation of community-based mental health and well-being interventions in LMICs can be optimised, and can complement general guidance into complex interventions developments. [ABSTRACT FROM AUTHOR]

Managing finances in dementia and on someone else's behalf can be difficult, especially with navigating the legalities surrounding this activity. With a lack of previous evidence, the aim of this qualitative study was to explore how people living with dementia and unpaid carers are planning the financing of dementia care and deal with legal issues surrounding finances. We recruited people living with dementia and unpaid carers from across the UK between February and May 2022. The topic guide was developed with two unpaid carers as advisers, and both contributed to the analysis and interpretation of findings, as well as dissemination. Participants were interviewed remotely, and transcripts analysed using inductive thematic analysis. Thirty unpaid carers and people with dementia participated. We generated three themes: Changes to family dynamics; Barriers to implementing legal arrangements in practice; Planning to pay for future care. Arranging financial management involved difficult family dynamics for some, including strained relationships between the carer and person cared for, and among carers. There was little to no guidance on how finances should be handled, causing difficulties in the implementation even when legal agreements were in place. The lack of guidance was equally experienced for information about how to pay for care and plan for paying for future care. Post-diagnostic support needs to include legal and financial advice, with clearer guidance on how to access financial support to pay for care. Future quantitative research should explore the link between economic background and access to financial support. [ABSTRACT FROM AUTHOR]

Background: Care home staff working during the COVID‐19 pandemic experienced higher levels of stress and increased workloads. People from diverse ethnic backgrounds were disproportionately affected by the COVID‐19 pandemic. This study explored the identity experiences of care home staff from diverse ethnic backgrounds in the context of working during the COVID‐19 pandemic. Methods: Fourteen semistructured interviews were conducted between May 2021 and April 2022 with ethnic minority care home staff in England, who worked during the pandemic. Participants were recruited using convenience and theoretical sampling. Interviews were conducted via telephone or online platforms. A social constructivist grounded theory methodology was utilised in analysing the data. Findings: Participants described five key processes which facilitated or hindered the impact that their experiences had on their identity: dealing with uncertainty and transitioning into a COVID‐19 world; difficult emotions; experiences of discrimination and racism; the response from the care home and societal systems; and the personal vs collective responsibility. When participants' physical and psychological needs went unmet by support structures within the care home and/or society, they experienced a sense of injustice, lack of control and being unvalued or discriminated against by others. Conclusions: This study highlights the importance of recognising the unique needs of staff from diverse ethnic backgrounds working in care homes and adapting working practices to improve impact on identity, job satisfaction and staff retention. Patient and Public Involvement: One care home worker was involved in developing the topic guide and helping to interpret the findings. [ABSTRACT FROM AUTHOR]

The COVID-19 pandemic and public health measures caused serious consequences for several population cohorts, including people with dementia in care homes and their families. The aim of this study was to explore the impact of COVID-19 on care home residents with dementia as experienced by family carers in Italy. Specifically, strategies implemented to overcome the pandemic's constraints, their influence upon care, and consequences for everyday life of residents with dementia and carers were investigated. Semi-structured interviews explored participants' experiences of the pandemic, its restrictions and the services' status during lockdown. Transcripts were analysed via thematic analysis. 26 family carers were interviewed. Three themes emerged: (1) COVID-19 restrictions negatively affected both residents with dementia and family carers, (2) Changing policies in care homes during COVID-19, and (3) Technology use in care homes during COVID-19. COVID-19 restrictions severely affected care home residents with dementia, disrupted their daily living, and accelerated their cognitive decline. Consequently carers' emotional burdens increased. Care home response strategies (safe visiting and digital solutions) were critical, though they were not enough to compensate for the lack of close in-person contacts. Mixed evidence emerged about the feasibility of care home strategies and their associated benefits. To meet arising needs and possible future pandemic waves, there is a need for updated health strategies. These should prioritise a continuity of therapeutic activities and minimize negative effects on residents' quality of life, whilst incorporating feasible and accessible digital solutions to provide remote communication and psychological support for family carers. [ABSTRACT FROM AUTHOR]

Little is known on how the pandemic has changed care home care delivery. The aim of this study was to explore the impact of COVID‐19 on care provision and visits in care homes from staff and family members' perspectives. For this purpose, we conducted a telephone‐ and zoom‐based qualitative semi‐structured interview study. Care home staff and family carers of people living with dementia (PLWD) across the UK were recruited via convenience sampling and participated via telephone or online. Participants took part in a semi‐structured remote interview. Data were collected between October and November 2020. Anonymised transcripts were analysed separately by two research team members using thematic analysis, with codes discussed and themes generated jointly, supported by research team input. 42 participants (26 family carers and 16 care home staff) took part. Five themes were generated: (a) Care home reputation and financial implications; (b) Lack of care; (c) Communication or lack thereof; (d) Visiting rights/changes based on residents' needs; (e) Deterioration of residents. With a lack of clear guidance throughout the pandemic, care homes delivered care differently with disparities in the levels and types of visiting allowed for family members. Lack of communication between care homes and family members, but also government and care homes, led to family carers feeling excluded and concerned about the well‐being of their relative. Improved communication and clear guidance for care homes and the public are required to negate the potentially damaging effects of COVID‐19 restrictions upon residents, their families and the carers who support them. [ABSTRACT FROM AUTHOR]

The COVID‐19 pandemic has significantly limited access to health and social care support systems for people with dementia and their carers, compounding the severe social restrictions. The aim of this study was to investigate the experiences of COVID‐19 among community‐dwelling people with dementia and their informal carers in Italy. Specifically, we focused on access to community‐based services and adopted solutions to provide support and care during exceptional times. Informal carers, caring for someone with dementia and attending community‐based services in Italy, participated in remote semi‐structured interviews between October and November 2020. Participants were asked about the effects of social isolation and closure of in‐person services on their daily lives as well as the challenges of dementia care. Transcripts were analysed using inductive thematic analysis. 22 informal carers were interviewed. Three themes emerged: (1) Disruptions to people with dementia's lives and health; (2) COVID‐19 as an additional stressor for carers; and (3) New ways of caring for people with dementia during COVID‐19. Face‐to‐face social care and social support services were suddenly interrupted and restrictions on social distancing were introduced, thus leading to people with dementia's impaired health and increased behavioural and psychological symptoms. Not only the amount but also the intensity of care increased, with no chance of respite for informal carers. Overall remote activities provided participants with emotional and social benefits, while allowing the continuity of relationships with services staff and users and of care. However, according to carers, a combination of virtual and face‐to‐face activities could better counterbalance the multiple adverse outcomes of COVID‐19. Public health measures should be designed carefully to consider the safety needs and the physical, psychological and social needs of people with dementia. Within a holistic care approach, social care services need to be enabled better to guarantee high‐quality care even during pandemic times. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Aims: The aim of this study was to explore the impact of the pandemic on the emotional and mental well‐being of family carers, care home staff and residents, in light of changing restrictions, increased testing and vaccination rollout in the UK. Design Longitudinal, qualitative semi‐structured interview study. Methods: Remote semi‐structured interviews were conducted with family carers of care home residents with dementia and care home staff from different care homes across the UK. Baseline and follow‐up interviews were conducted in October/November 2020 and March 2021, respectively. Data were analysed using inductive thematic analysis involving members of the public with caring experiences. Results: In all, 42 family carers and care home staff participated at baseline, with 20 family carers and staff followed up. We identified four themes: (1) Developing anger and frustration; (2) Impact on relationships; (3) Stress and burnout; and (4) Behavioural changes, and perceived impact on residents. The mental health of everyone involved, including family carers, care home staff and residents, has been negatively affected, and relationships between family carers and staff have been severely strained. There was a general lack of adequate mental health support, with little relief. Conclusions: The pandemic has had a detrimental impact on the lives of those surrounding care homes—from residents and staff to family carers. Consideration should be given on how to best support the mental health needs of all three groups, by providing adequate easily accessible mental health care for all. This should also focus on rebuilding the relationships between family carers and care home staff. Impact This is the first paper to highlight the effects of the long‐lasting and miscommunicated restrictions on residents, carers and care home staff, and highlight the urgent need for continued mental health support. [ABSTRACT FROM AUTHOR]

Purpose: To report the experiences of End of Life (EoL) care in UK care homes during the COVID-19 pandemic. Methods: UK care home staff and family carers of residents in care home took part in remote, semi-structured interviews from October to November 2020, with 20 participants followed-up in March 2021. Interviews were conducted via telephone or online platforms and qualitatively analysed using inductive thematic analysis. Results: Forty-two participants (26 family carers and 16 care home staff) were included in a wider qualitative study exploring the impact on dementia care homes during the pandemic. Of these, 11 family carers and 9 care home staff participated in a follow-up interview. Following descriptive thematic analysis, three central themes concerning EoL care during the pandemic specifically, were conceptualised and redefined through research team discussions: 1) Wasting or losing time; 2) Maintaining control, plans and routine; and 3) Coping with loss and lack of support. Lack of suitable, meaningful visits with people with dementia in care homes resulted in negative feelings of guilt and abandonment with both family carers and care home staff. Where families experienced positive EoL visits, these appeared to breach public health restrictions at that time. Conclusion: It is recommended that care homes receive clear guidance from the government offering equitable contact with relatives at EoL to all family members, to support their grieving and avoid subsequent negative impacts to emotional wellbeing. [ABSTRACT FROM AUTHOR]

Objectives: Little is known about how community services and institutional care settings have adapted to providing support since the COVID-19 pandemic. The aim was to explore how these care services have adapted during the pandemic in the UK and are providing care to people living with dementia (PLWD) and carers. Method: Semi-structured telephone interviews were conducted in June and July 2020 with 16 purposefully sampled unpaid dementia carers. Participants were asked about their experiences of accessing care services since the lockdown, and whether they were beneficial, if accessed at all. Results: Three themes were identified: (1) Impacts of no activities; (2) Difficulties accessing care during the pandemic; (3) Remote vs. face-to-face support. Loss of access to previously enjoyed activities and having had to shield for many PLWD is suggested to have led to severe physical and cognitive deteriorations, advancing the dementia. Where remote support was available, this was helpful to some, but did not replace the benefits of face-to-face support. Where PLWD were residing in a care home, carers had very limited remote access. Conclusions: This is the first study to explore the impact on carers both from a community and institutionalised care angle. Few care services have adapted to providing remote support. With the vaccine taking time to be accessible to everyone, it is vital for organisations to work closely with carers and PLWD to adapt services to provide much needed support. [ABSTRACT FROM AUTHOR]

A large number of older adults (65+ years) live on their own, and can experience high levels of loneliness. However, accessing activities to engage with their community can be difficult either due to their age and associated comorbidities, such as frailty, or due to financial reasons, for lacking the funds to access transport to activities. The aim of this study was to evaluate an existing service in the North West of England, Community Connectors, which enables people aged 18 and above to access social activities within their community in order to reduce loneliness and social isolation. This study only included middle‐aged and older adults. A total of 13 semi‐structured interviews were performed after people had taken part in the 14‐week Community Connectors programme. Data were coded by two research team members by using thematic analysis. Members of the public were involved in the design of this study, and in the dissemination. Between June 2017 to September 2018, 234 older adults and 53 middle‐aged adults were referred to Community Connectors. Four themes emerged from the interviews: falling out of society; easy self‐referral; structured supportive services; and reconnecting with community. Services often depend on individuals making the first step to access, however, without easy or facilitated access people can becoming isolated. Participants reported on how Community Connectors provided easy and open access that enabled better response to individual needs. The structured support provided individuals with confidence in engaging with community activities and enhanced individuals' social networks. Community Connectors enables middle‐aged and older adults to engage with social activities in their community, and thus helps participants to feel less lonely and more socially connected. Future work needs to quantitatively measure the impacts of the service on loneliness, depression, and social connectedness in order to fully understand their impact. [ABSTRACT FROM AUTHOR]

Older adults across the globe have been particularly affected by the novel coronavirus due to their increased susceptibility to the virus. With limited existing research, the aim of this study was to explore the psychological effects of COVID-19 public health measures on older adults in Uganda and their coping mechanisms. Thirty semi-structured interviews were conducted with older Ugandans (aged 60+) in June 2020. Participants were asked about their experiences of public health measures, and their effects on the lives of older adults compared to pre-pandemic. Three themes were identified: Impact on emotional well-being; Implications on physical well-being; and Coping mechanisms. Older adults experienced both psychological and physical effects, including upset, fear, and frustration about restrictions and the virus, as well as early signs of increased frailty, thus causing concerns for the long-term emotional and physical health of older Ugandans. Public health measures need to be considerate of the potential long-term implications on the well-being of older adults in low-, middle-, and high-income countries, and ensure the possibility for continued physical exercise and social connection. This can be particularly challenging for people from more disadvantaged backgrounds who may not be able to afford a smartphone or laptop, with older adults further requiring support in using digital technologies. Older adults need to receive adequate psychological support to cope with the mental health impacts of the pandemic. [ABSTRACT FROM AUTHOR]

Background vaccination uptake in the UK and increased care home testing are likely affecting care home visitation. With scant scientific evidence to date, the aim of this longitudinal qualitative study was to explore the impact of both (vaccination and testing) on the conduct and experiences of care home visits. Methods family carers of care home residents with dementia and care home staff from across the UK took part in baseline (October/November 2020) and follow-up interviews (March 2021). Public advisers were involved in all elements of the research. Data were analysed using thematic analysis. Results across 62 baseline and follow-up interviews with family carers (n  = 26; 11) and care home staff (n  = 16; 9), five core themes were developed: delayed and inconsistent offers of face-to-face visits; procedures and facilitation of visits; variable uptake of the COVID-19 vaccine; misinformation, education and free choice; frustration and anger among family carers. The variable uptake in staff, compared to family carers, was a key factor seemingly influencing visitation, with a lack of clear guidance leading care homes to implement infection control measures and visitation rights differently. Conclusions we make five recommendations in this paper to enable improved care home visitation in the ongoing, and in future, pandemics. Visits need to be enabled and any changes to visiting rights must be used as a last resort, reviewed regularly in consultation with residents and carers and restored as soon as possible as a top priority, whilst more education needs to be provided surrounding vaccination for care home staff. [ABSTRACT FROM AUTHOR]

Accessing social care and social support services is key to support the well-being of people living with dementia (PLWD) and unpaid carers. COVID-19 has caused sudden closures or radical modifications of these services, and is resulting in prolonged self-isolation. The aim of this study was to explore the effects of COVID-19 related social care and support service changes and closures on the lives of PLWD and unpaid carers. PLWD and unpaid carers were interviewed via telephone in April 2020. Transcripts were analysed using thematic analysis. Demographic characteristics including household Index of Multiple Deprivation score and weekly hours of social support service usage before and since the COVID-19 outbreak were also collected. Paired samples t-tests was used to compare the mean of weekly hours of social support service usage before and since the outbreak. 50 semi-structured interviews were conducted with unpaid carers (n = 42) and PLWD (n = 8). There was a significant reduction in social support service usage since the outbreak. Thematic analysis identified three overarching themes: (1) Loss of control; (2) Uncertainty; (3) Adapting and having to adapt to the new normal. Carers and PLWD were greatly affected by the sudden removal of social support services, and concerned about when services would re-open. Carers were worried about whether the person they cared for would still be able to re-join social support services. PLWD and carers need to receive specific practical and psychological support during the pandemic to support their well-being, which is severely affected by public health restrictions. [ABSTRACT FROM AUTHOR]

Background: Social support services such as day care centres are important in post-diagnostic dementia care to enable people living with dementia stay at home for longer. Little research has addressed potential inequalities in access, with no research on variations before and since COVID-19. The aim of this study was to explore inequalities in social support service usage before and since the pandemic. Methods: Unpaid carers and people living with dementia were interviewed over the phone about their experiences of accessing social support services before and since the COVID-19 pandemic. Transcripts were analysed for key themes using inductive and deductive thematic analysis. Results: Fifty participants (42 unpaid carers; eight people living with dementia) were interviewed, and five themes identified: (1) Service issues; (2) Access issues; (3) Relying on own initiative; (4) New inequalities due to COVID-19; and (5) Missing out on the benefits of support services. Participants reported transport, finances, and location as factors reducing their ability to access support service pre-COVID, with inequalities remaining and at times exacerbated since. Carers and people living with dementia also reported struggling with accessing basic necessities during COVID, including food and medicines. Conclusions: Considering the benefits of accessing support services, resourced procedures and facilities are needed to maintain access to support services with more accessible remote support provision, enabling people from all backgrounds to access the care they need. [ABSTRACT FROM AUTHOR]

Purpose: People living with Motor Neurone Disease (plwMND) have emphasised the importance of psychological support and well‐being in helping them manage their condition. Social prescribing is a formal process of referring patients with largely socioeconomic and psychosocial issues to a link worker to co‐design a plan to improve their health and well‐being. Intervention involves supporting engagement in meaningful activities based within the individual's local community. This pilot project aimed to explore the application of social prescribing with plwMND. Methods: A cohort of plwMND were supported by an occupational therapist and link worker to identify and access community‐based activities. Qualitative interviews were completed post‐intervention with the plwMND and the link workers. Findings were analysed using thematic analysis. Results: A total of nine plwMND took part in this pilot service, and five plwMND and four link workers were interviewed. PlwMND valued participation and wanted to engage in community‐based activities. Those with mild symptomatology were able to access activities and reported a positive impact on their well‐being. Those with more complex needs, particularly reduced mobility, experienced significant barriers to participation. Barriers included transport, equipment provision, lack of company to support participation and lack of confidence using mobility aids in a community environment. Link workers valued joint working with an occupational therapist. Conclusion: Social prescribing aims to address the health inequalities of those living with long‐term conditions, although currently it likely excludes plwMND. Future work needs to quantitatively evaluate the effects of the service on the well‐being of plwMND. [ABSTRACT FROM AUTHOR]

Objectives: The aim of this study was to explore the remaining abilities of people with dementia (PwD) in performing daily activities. Method: Informal carers of community-residing PwD were recruited across England via mail out and carer support groups. Carers completed the revised Interview for Deteriorations in Daily Living Activities in Dementia 2 to rate the PwD's initiative and performance of daily activities. Six complex instrumental activities of daily living (IADLs) were selected: shopping, preparing a hot drink, using the telephone, preparing a cold meal, house work, and engaging in social activities, all of which were broken down into three sub-tasks. Data were analysed using Chi-square tests and linear regression analysis, assessing the contributions of hours of IADL care, hours of supervision, and dementia stage for each activity. Results: 581 carers of people with mild, moderate, and severe dementia completed the questionnaire. The ability to perform individual activities deteriorated from mild to moderate to severe dementia, with PwD remaining the most able to perform subtasks of preparing a hot drink and a cold meal. Subtask performance varied across activities, with some better maintained than others across severity stages. Linear regression models showed that hours of supervising PwD explained a greater proportion of the variance of each IADL than IADL care hours. Conclusion: PwD should be supervised to continue engaging in activities, thereby avoiding performing everything for the PwD. Findings can have implications for PwD living in nursing homes, and future research should explore the remaining IADL abilities of nursing home residents. [ABSTRACT FROM AUTHOR]

Background: South Asian older adults are represented less frequently in mainstream mental health services or those for people with dementia. This study aimed to explore in detail the perceptions of dementia (symptoms, causes, consequences, treatments) held by South Asians and to discern how these understandings vary by age and by the self-recognition of memory problems, as these influence help-seeking behaviour. Methods: Participants were allocated to three groups: younger adults; older adults; and older adults with subjective memory problems. They completed the semi-structured Barts Explanatory Model Inventory for Dementia schedule, whilst older adults also completed measures of cognition (MMSE), and depression (GDS). Interviews were conducted in English, Gujarati or Urdu. Results: Groups were similar in identifying unusual forgetting and confusion as the most frequent symptoms; stress and age as the most frequent causes; and talking to your GP/nurse, taking medication, and talking to family and friends as the most frequent treatments. Younger adults more often knew about risk factors and reported practical consequences more than older adults. Older adults with subjective memory problems were more likely to describe sleep related problems or symptoms commonly associated with depression. They more often cited as causes of dementia lack of sleep, side effects of medication and medical reasons, and mentioned religion as a means to cope. Conclusions: Findings highlight variability in perceptions of dementia across the South Asian Community and identify specific areas where dementia awareness could be raised in South Asian sub-groups to improve timely diagnosis, treatment outcomes and service access. [ABSTRACT FROM AUTHOR]

Objective:Studies indicate a limited understanding of dementia and its associated symptoms, causes and consequences among South Asian older adults. As a consequence, fewer people from this ethnic group receive a diagnosis of dementia. The aim of this study was to adapt the previously designed Barts Explanatory Model Inventory Checklist (BEMI-C), a tool designed to elicit perceptions of mental illness from people with different cultural backgrounds, for use with people with dementia in the South Asian population. Method:Both a literature review and 25 qualitative interviews were conducted to find themes and perceptions that are relevant to the South Asian culture in recognising and dealing with symptoms of dementia. The emergent themes and perceptions were then added to the BEMI-C through synthesis of findings. Results:The initial four checklists of symptoms, causes, consequences and treatments from the BEMI-C were retained in the new BEMI-Dementia (BEMI-D) and expanded with six additional themes, including 123 new perceptions relevant to the understanding of dementia. All new themes emerged from the qualitative interviews, some of which were also found in the literature. Conclusion:Given the national priority of improving dementia awareness and timely diagnosis, the BEMI-D can serve as a useful tool, in research and perhaps practice, to assess the barriers to dementia service uptake in this population and their understandings of dementia. Based on the detailed methodological description of the adaptation of the BEMI-C, this paper further suggests how this tool can be adapted to suit other ethnic minority groups. [ABSTRACT FROM AUTHOR]

Objectives: People with dementia (PwD) require an increasing degree of assistance with activities of daily living (ADLs), and dependency may negatively impact on their well-being. However, it remains unclear which activities are impaired at each stage of dementia and to what extent this is associated with variations in quality of life (QoL) across the different stages, which were the two objectives of this study. Methods: The sample comprised 122 PwD, and their carers, either living at home or recently admitted to long-term care. Measures of cognition and QoL were completed by the PwD and proxy measures of psychopathology, depression, ADLs and QoL were recorded. Using frequency, correlation and multiple regression analysis, data were analysed for the number of ADL impairments across mild, moderate and severe dementia and for the factors impacting on QoL. Results: ADL performance deteriorates differently for individual activities, with some ADLs showing impairment in mild dementia, including dressing, whereas others only deteriorate later on, including feeding. This decline may be seen in the degree to which carers perceive ADLs to explain the QoL of the PwD, with more ADLs associated with QoL in severe dementia. Results of the regression analysis showed that total ADL performance however was only impacting on QoL in moderate dementia. Conclusion: Knowledge about performance deterioration in different ADLs has implications for designing interventions to address specific activities at different stages of the disease. Furthermore, findings suggest that different factors are important to consider when trying to improve or maintain QoL at different stages. [ABSTRACT FROM AUTHOR]

Objectives To explore associations between carer burden and characteristics of (1) the informal carer, (2) the person with dementia, and (3) the care support network in 8 European countries. Design Cross-sectional study. Setting People with dementia judged at risk of admission to long-term care (LTC) facilities in 8 European countries (Estonia, Finland, France, Germany, Netherlands, Spain, Sweden, United Kingdom). Participants A total of 1223 people with dementia supported by community services at home or receiving day care or respite care and their informal carers. Measurements Variables regarding the informal carer included familial relationship and living situation. Variables relating to the person with dementia included cognitive functioning (S-MMSE), neuropsychiatric symptoms (NPI-Q), depressive symptoms (Cornell depression scale), comorbidity (Charlson Comorbidity Index), and physical functioning (Katz Activity of Daily Living [ADL] Index). The care support network was measured using hours of caregiving (ADLs, instrumental ADLs [IADLs], supervision), additional informal care support, and service receipt (home care, day care). Experience of carer burden was recorded using the Zarit Burden Interview. Logistic regression analysis was used to determine factors associated with high carer burden. Results Carer burden was highest in Estonia (mean 39.7/88) and lowest in the Netherlands (mean 26.5/88). High burden was significantly associated with characteristics of the informal carer (family relationship, specifically wives or daughters), of the person with dementia (physical dependency in ADLs; neuropsychiatric symptoms, in particular nighttime behaviors and irritability), the care support network (hours of caregiving supervision; receipt of other informal care support) and country of residence. Conclusion A range of factors are associated with burden in informal carers of people with dementia judged to be on the margins of LTC. Support for informal carers needs to take account of gender differences. The dual challenges of distressed behaviors and difficulties in ADLs by the person with dementia may be addressed by specific nonpharmacological interventions focusing on both elements. The potential protective effect of additional informal support to carers highlights the importance of peer support or better targeted home support services. The implementation of appropriate and tailored interventions to reduce burden by supporting informal carers may enable people with dementia to remain at home for longer. [ABSTRACT FROM AUTHOR]