The Impact of Social Distancing Due to the COVID-19 Pandemic on People with Dementia, Family Carers and Healthcare Professionals: A Qualitative Study.
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SUBMITTER: Smaling HJA
PROVIDER: S-EPMC8744737 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:there is little research on preferences in students and newly qualified healthcare professionals for working with people with dementia. Understanding the development of these preferences can help inform strategies to increase workforce capacity in response to current suboptimal dementia care and the increasing numbers of people with dementia. to explore the factors that influence career preferences in relation to working with people with dementia. Specifically, to understand how these factors relate to early career doctors' and nurses' preferences and how they influence decisions and perspectives on their careers. qualitative in-depth interviews were conducted with 27 newly qualified doctors and nurses within 2 years of graduation. This included a subset of participants that had taken part in a dementia educational intervention during their undergraduate training. Transcripts were analysed using grounded theory methods. the results present six main categories representing complex interlinked factors influencing preferences for working with people with dementia as well as exploring the definition of a career working with people with dementia. The factors include the importance of making a difference; seeing dementia care as a different type of care; its perceived alignment with personal characteristics; perceptions of people with dementia; care environments and career characteristics. this is the first study to explore the factors influencing preferences for working with people with dementia in newly qualified healthcare professionals. It provides useful data to inform workforce planning, and curriculum and practice development to stimulate interest and drive improved quality of care.
| S-EPMC8753027 | biostudies-literature
Project description:ObjectivesTo analyse people with dementia and their family carers' attribution of social changes in dementia and the consequences of these attributions.DesignQualitative study, using a semi-structured interview guide. Individual interviews continued to theoretical saturation. Two researchers independently analysed interview transcripts.Setting and participantsPeople with mild dementia and family carers purposively selected from London-based memory services for diverse demographic characteristics to encompass a range of experiences.Primary and secondary outcomesAttribution of social changes experienced by the person with dementia and the consequences of these attributions.ResultsWe interviewed nine people with dementia and nine carers, encompassing a range of age, ethnicity and educational backgrounds.Both groups reported that the person with dementia had changed socially. People with dementia tended to give one or two explanations for social change, but carers usually suggested several. People with dementia were often socially embarrassed or less interested in going out, and they or their relatives' physical illness or fear of falls led to reduced social activity. Carers often attributed not going out to a choice or premorbid personality. Carers found that their relative needed more support to go out than they could give and carers needed time to themselves because of carer stress or other problems from which they shielded the person with dementia. Additionally, there was decreased opportunity to socialise, as people were bereaved of friends and family. Participants acknowledged the direct impact of dementia symptoms on their ability to socially engage but sometimes decided to give up socialising when they knew they had dementia. There were negative consequences from social changes being attributed to factors such as choice, rather than dementia.ConclusionClinicians should ask about social changes in people with dementia. Explaining that these may be due to dementia and considering strategies to overcome them may be beneficial.
| S-EPMC5541577 | biostudies-literature
Project description:ObjectiveTo explore the experiences of healthcare professionals working in falls prevention and memory assessment services in providing assessments and interventions for falls risk reduction in people with dementia.DesignThis is a qualitative study using 19 semistructured interviews. Interviews were analysed through thematic analysis.SettingCommunity-based falls and memory assessment services in the East Midlands, UK.ParticipantsNurses (n=10), physiotherapists (n=5), occupational therapists (n=3) and a psychiatrist (n=1).ResultsThree substantive themes were identified: challenges posed by dementia, adaptations to make falls prevention appropriate for people with dementia and organisational barriers. Patients' poor recall, planning and increased behavioural risk associated with dementia were key problems. Healthcare professionals provided many suggestions on how to overcome these challenges, such as adapting exercise interventions by using more visual aids. Problems associated with cognitive impairment created a need for additional support, for instance longer interventions, and supervision by support workers, to enable effective intervention, yet limited resources meant this was not always achievable. Communication between mental and physical health teams could be ineffective, as services were organised as separate entities, creating a reliance on third parties to be intermediaries. Structural and organisational factors made it difficult to deliver optimal falls prevention for people living with dementia.ConclusionsHealthcare professionals experience challenges in providing falls prevention to people with dementia at the individual and organisational levels. Interventions can be adapted for people with dementia, but this requires additional resources and improved integration of services. Future research is needed to develop and test the effectiveness and cost-effectiveness of such services.
| S-EPMC6377506 | biostudies-literature
Project description:BackgroundMany qualitative studies report the post-diagnostic care experiences of carers and people living with dementia; however, this is not often accompanied by opportunities to hear the corresponding views of their health care professionals and how this triadic relationship functions. The aim of this review was to identify and thematically synthesize the experiences of health care services reported by people living with dementia, their carers and health care professionals.MethodsMedline, PsycINFO, Embase and CINAHL were searched from inception to 31 July 2019 for qualitative research including people living with dementia, carers and health care professionals. Data were coded and thematically synthesised using NVivo.ResultsOf 10,045 search results, 29 papers relating to 27 studies were included in the final synthesis, including 261 people living with dementia, 444 carers and 530 health care professionals. Six themes emerged related to the functioning of a dementia care triad: (1) involving the person living with dementia, (2) establishing expectations of care and the roles of the members of the triad, (3) building trust, (4) effective communication, (5) continuity of care and (6) understanding the unique relationship dynamics within each triad.DiscussionThe interactions and complexity of triadic dementia care relationships further our understanding of how to improve dementia care. Awareness of possible diverging attitudes highlights areas of necessary improvement and further research into facilitating engagement, such as when multiple professionals are involved or where there are mismatched expectations of the roles of triad members. In order to operate efficiently as a triad member, professionals should be aware of how pre-existing relations can influence the composition of a triad, encourage the involvement of the person living with dementia, clarify the expectations of all parties, establish trusting relationships and enable communication within the direct triad and beyond.
| S-EPMC8047709 | biostudies-literature
Project description:PurposeThere is some evidence of the benefits of physical activity (PA) in patients with lung cancer; however, there is a lack of understanding of acceptable PA for patients with established cachexia and how to facilitate sustainable behaviour change to promote PA. Therefore, this study explored the views of healthcare professionals (HP), patients with lung cancer and cachexia, and their carers on preferences for, barriers and facilitators of homebased PA.MethodsThis qualitative study involved ten telephone interviews with HPs and face-to-face interviews with seven patients with lung cancer and cachexia and their carers. Interviews were transcribed and analysed thematically. The Capability, Opportunity, Motivation and Behaviour (COM-B) model was used as a framework for the thematic cross-group analysis.ResultsThe types of homebased PA suggested by patients with lung cancer and cachexia (n = 7), their carers (n = 7) and HPs (n = 10) were functional, flexible, individualised and initially of short duration and low intensity. PA was influenced by themes within physical and psychological Capability, physical and social Opportunities as well as automatic and reflective Motivation.ConclusionBased on a behaviour change theory, principles to promote homebased PA were developed. These principles need to be integrated into tools to promote PA in people with lung cancer and weight loss.Implications for cancer survivorsThe application of the proposed principles by clinicians will promote physical activity, enhancing the function and wellbeing of patients with lung cancer and reducing burden on carers.
| S-EPMC10209237 | biostudies-literature
Project description:IntroductionThis study examines the potential of dance to improve social inclusion for people living with dementia and carers. Research suggests that arts-based programmes can improve the health of people living with dementia and carers; however, little is known about how these programmes might address barriers to social inclusion. Addressing barriers requires the development and evaluation of accessible, non-stigmatising and affordable programmes that facilitate social inclusion across the continuum of institutional, community and household care settings.Methods and analysisThe study involves a qualitative sequential pilot study of the innovative Baycrest NBS Sharing Dance Seniors programme underway in non-metropolitan regions of two Canadian provinces. It focuses on the remotely instructed delivery of the programme in care facilities, community centres and households. The study involves five phases of observations, diaries, focus groups and interviews with programme participants (people living with dementia), carers, coordinators, instructors and volunteers as well as critical reflections among research investigators and knowledge users. NVivo-based thematic and narrative analyses of the qualitative data will produce new knowledge about the experiences, effectiveness and challenges of the dance programme that will inform understanding of whether and in what ways it increases social inclusion and quality of life for older people living with dementia and carers. The findings will identify opportunities for programme expansion and support the further development of arts-based approaches.Ethics and disseminationThe study is approved by the Research Ethics Boards at Trent University and Brandon University, and by participating organisations according to their governance procedures. The perspectives of people living with dementia and carers are incorporated throughout the study (from design to dissemination) and the study adheres to the ethical considerations when including people with dementia. A series of publicly available reports, seminars and symposia will be undertaken in collaboration with knowledge user and collaborating organisation partners.
| S-EPMC6278785 | biostudies-literature
Project description:ObjectivesThe COVID-19 pandemic has led to significant disruption to health and social care services. For people with dementia and their family carers this is problematic, as a group who rely on timely and responsive services to live well with the condition. This study has sought to understand how COVID-19 has affected the quality of life of people diagnosed with dementia and their family carers.DesignOur mixed-methods study was nested in a larger cohort study of an education programme, Time for Dementia.SettingThe study took place in the South-East of England.ParticipantsExisting study participants, family carers were approached about the COVID-19 nested study. A purposeful sample of participants were invited to take part in in-depth qualitative interview. The sample included family carers in a range of different caring situations.MeasurementInterviews were undertaken remotely by telephone. Interviews sought to understand quality of life before the pandemic, impact of the restrictions on both the person with dementia and family carer, role of services and other agencies as well as supportive factors. Data were analysed using thematic analysis.Results16 family carers were interviewed. Seven themes were identified from our analysis: (1) decreased social interaction; (2) reduced support; (3) deteriorating cognitive and physical health for the person with dementia; (4) decreased carer well-being; (5) difficulties understanding COVID-19 restrictions; (6) limited impact for some and (7) trust and relationship with care home. There was little change between themes during the first and second wave of national lockdowns.ConclusionsOur study provides an understanding the short-term impact of COVID-19 on the quality of life of people with dementia and their family carers. Our findings suggest that recovery between the first and second wave of the restrictions did not automatically take place.
| S-EPMC8845096 | biostudies-literature
Project description:BackgroundThe impact of COVID-19 restrictions on people living with dementia and their carers is an emerging focus of recent research determining how we can best support this population. People living with dementia have faced service curtailment, increased risk for COVID-19, as well as potential heightened deterioration. This study reports the experiences of people living with dementia and their family carers during the early months of the COVID-19 pandemic in England and the impact on them.MethodsWe recruited and remotely interviewed 30 people living with dementia in their own homes and 31 family carers, via video or telephone call in mid-2020. Data were transcribed and analysed using thematic analysis.ResultsPeople living with dementia often had a basic understanding of COVID-19 restrictions but could have difficulty translating this into personalised risk-appraisal of their own actions. Managing COVID-19 risks facing people living with dementia at home was largely done by family carers, exemplified by changes to living arrangements, which could strain or sustain caring relationships. Well-established familial caring relationships contributed to the wellbeing of the person living with dementia and their carer, as well as keeping to simple routines that included leaving the home for exercise and stimulation. People living with dementia reported some negative psychological and cognitive effects due to the imposed restrictions, such as increased apathy, irritability, or anxiety, which were fuelled by lack of social engagement.ConclusionsStructuring routine (remote) social interactions where possible could increase social engagement and improve wellbeing for people living with dementia, especially those with limited familial support in a post-COVID-19 context. As some care relationships had been restructured to manage COVID-19 risks, additional carer strain may emerge as a result of the impact on the independence of the person living with dementia and come to the attention of professionals in health and care services. People living with dementia and their carers highlighted the importance of maintaining or adapting routines which may be useful learning for professionals, although additional support may be necessary for those who are impacted by more severe or worsening symptoms of dementia.
| S-EPMC8107803 | biostudies-literature
Project description:BackgroundThere has been a shift in focus of international dementia policies from improving diagnostic rates to enhancing the post-diagnostic support provided to people with dementia and their carers. There is, however, little agreement over what constitutes good post-diagnostic support. This study aimed to identify the components of post-diagnostic dementia support.MethodsWe adopted a qualitative design using interviews, focus groups and observation to explore the perspectives of key stakeholders on the content of post-diagnostic dementia support. Purposive sampling was used to identify sites in England and Wales recognised as delivering good practice. Participants included 17 people with dementia, 31 carers, 68 service managers or funders, and 78 frontline staff. Interviews and focus groups were audio recorded and transcribed for analysis. Forty-eight sessions of observation were completed and recorded in fieldnotes. Components were identified through an inductive, thematic approach and cross-checked against national guidelines and existing frameworks; they were subsequently critically reviewed by a range of experts and our mixed stakeholder panel.ResultsTwenty distinct components of post-diagnostic support were identified, related to five themes: timely identification and management of needs; understanding and managing dementia; emotional and psychological wellbeing; practical support; and integrating support. The first and last of these were cross-cutting themes facilitating the delivery of a unique constellation of components of post-diagnostic support to each individual living with dementia or dyad at a particular time.ConclusionsOur work offers an empirically based framework to inform the development and delivery of holistic, integrated and continuous dementia care from diagnosis to end of life. It highlights the relevance of many components to both people living with dementia and their carers. Since the framework was developed in England and Wales, further research is needed to explore the relevance of our components to other sectors, countries and care systems.
| S-EPMC8687564 | biostudies-literature
Project description:ObjectiveTo identify common difficult decisions made by family carers on behalf of people with dementia, and facilitators of and barriers to such decisions, in order to produce information for family carers about overcoming barriers.DesignQualitative study to delineate decision areas through focus groups and complexity of decision making in individual interviews.SettingCommunity settings in London.Participants43 family carers of people with dementia in focus groups and 46 carers who had already made such decisions in individual interviews.ResultsFamily carers identified five core problematic areas of decision making: accessing dementia related health and social services; care homes; legal-financial matters; non-dementia related health care; and making plans for the person with dementia if the carer became too ill to care for them. They highlighted the difficulties in making proxy decisions, especially against active resistance, and their altered role of patient manager while still a family member. Families devised strategies to gain agreement in order to ensure that the person with dementia retained dignity.ConclusionsThe following strategies helped with implementation of decisions: introducing change slowly; organising legal changes for the carer as well as the patient; involving a professional to persuade the patient to accept services; and emphasising that services optimised, not impeded, independence. To access services, carers made patients' general practice appointments, accompanied them to the surgery, pointed out symptoms, gained permission to receive confidential information, asked for referral to specialist services, and used professionals' authority to gain patients' agreement. End of life decisions were particularly difficult. They were helped by knowledge of the person with dementia's previous views, clear prognostic information, and family support. Information sheets to help carers to overcome barriers to proxy decision making have been developed; their impact in practice has yet to be evaluated.
| S-EPMC2923693 | biostudies-literature