scholarly journals ‘Four walls and a garden’: Exploring the experiences of families affected by dementia during the COVID-19 pandemic

Dementia ◽  
2021 ◽  
pp. 147130122110590
Author(s):  
Emily Cousins ◽  
Kay de Vries ◽  
Karen Harrison Dening
Keyword(s):  
Qualitative Study ◽  
Peer Support ◽  
Family Carers ◽  
Social Disruption ◽  
Structured Interviews ◽  
Social Contacts ◽  
Social Division ◽  
People With Dementia ◽  
The Uk ◽  
The Impact

Introduction When the first national COVID-19 lockdown came into effect in the UK in March 2020, life changed significantly. Some services and social contacts for people with dementia and their families stopped, while others, for example, peer support, moved online. This research explored the experiences of families affected by dementia during the pandemic, specifically those living in the community. Aims In partnership with a community dementia charity, this study sought to gain an understanding of the experiences of people with dementia and family carers during the COVID-19 pandemic and explore the impact and implications of lockdown on people with dementia and family carers. Methods This was a qualitative study that used semi-structured interviews to collect data from people with dementia and family carers. Interviews were conducted online via video call, individually or within caring dyads. Initially, data were coded, analysed and themed inductively. Additionally, social disruption and social division theories were used to deductively identify patterns in the data to enhance understanding. Findings Six distinct themes were identified from the inductive analysis: Routine: ‘busy life before lockdown’; Isolation: ‘ four walls and a garden’; Living with restrictions: ‘ treading on eggshells’; Discovering positives: ‘you are in the same boat’; Easing lockdown: ‘ raring to go’; Heightened uncertainty: ‘ things have changed’. Illustrative examples of symptoms of social disruption and division were identified within the data: frustration, democratic disconnection, fragmentation, polarisation and escalation. Conclusion Experiences of people with dementia and family carers during the pandemic were mixed, resulting in hopes and worries for the future. Social disruption and social division are relevant frameworks for analysing experiences of COVID-19.

scholarly journals Swimming for dementia: An exploratory qualitative study: Innovative practice

Dementia ◽  
2018 ◽  
Vol 18 (2) ◽  
pp. 776-784 ◽  
Author(s):  
Tanya Hobden ◽  
Mary Swallow ◽  
Charlotte Beer ◽  
Tom Dening
Keyword(s):  
Qualitative Study ◽  
Physical Fitness ◽  
Thematic Analysis ◽  
Local Group ◽  
Weight Bearing ◽  
Structured Interviews ◽  
Innovative Practice ◽  
People With Dementia ◽  
The Impact

Swimming is a non-weight bearing form of exercise that can be enjoyable and promote physical fitness. This qualitative study investigated a local group established as part of a national dementia swimming initiative. Semi-structured interviews with people with dementia (N = 4), carers or companions (N = 4) and the organisers and facilitators of the group (N = 6) were analysed using thematic analysis. This revealed four main themes: (1) the pleasure of swimming and its benefits as a form of exercise and for building confidence and empowering participants, (2) the importance of insight and empathy in creating a safe and secure experience, (3) the impact of dementia and (4) how participants valued being part of a group ‘all in the same boat’. ‘Dementia friendly swimming’ appears to be a valuable form of exercise, but it requires considerable preparation and support to make it happen.

scholarly journals The impact of the first UK Covid-19 lockdown on carers and people living with low prevalence dementia: results from the Rare Dementia Support survey

2020 ◽  
Author(s):  
Aida Suárez-González ◽  
Emma Harding ◽  
Nikki Zimmerman ◽  
Zoe Hoare ◽  
Emilie Brotherhood ◽  
...  
Keyword(s):  
Mental Health ◽  
Well Being ◽  
Care Homes ◽  
Cognitive Symptoms ◽  
Family Carers ◽  
People With Dementia ◽  
The Uk ◽  
Low Prevalence ◽  
Person With Dementia ◽  
The Impact

AbstractIntroductionThe public health measures imposed to contain Covid-19 during the first UK lockdown resulted in significant changes in the provision of community support and care for people with dementia. People with low prevalence and young-onset dementias often experience non-memory, behavioural or neuropsychiatric symptoms that require specialised support.ObjectiveWe explored the impact of the first Covid-19 lockdown on people living with low prevalence and young-onset dementia and their carers in the UK.MethodAn online survey, including eleven questions about the impact of the lockdown on both the person with dementia and their family caregivers was conducted. Participants were people living with dementia and caregivers who are members of the UK national-reach organisation Rare Dementia Support.Results184 carers and 24 people with dementia completed the survey. People with dementia experienced worsening of cognitive symptoms (70%), ability to do things (62%) and well-being (57%) according to their carers. Carers also reported a reduction in the support received for caring (55%). 93% of carers of people living in care homes reported a reduction in their ability to provide care. 26% of carers reported changes in the medication of the person with dementia during the lockdown. 74% of people with dementia reported decreased ability to connect with people socially.ConclusionsPeople with dementia experienced a worsening of dementia symptoms, removal of support and increased difficulty to connect with other people socially during the 1st wave of Covid-19. Carers encountered barriers to both receiving and providing support and a decline in their own mental health and well-being.Key points70 % of carers reported cognitive symptoms getting worse during the lockdown (e.g., the person with dementia being more disoriented and finding it more difficult to communicate).26 % of carers reported a change (initiation or increase) in medication in the person with dementia during the lockdown.79 % carers reported their own physical or mental health getting worse due to the lockdown. This increased to 93% when considering responses only from family carers of people living in care homes.93 % of family carers of people living in care homes found it harder to continue providing care and support for their relative due to Covid-19.

scholarly journals The Impact of the Physical Home Environment for Family Carers of People with Dementia: A Qualitative Study

2017 ◽  
Vol 31 (4) ◽  
pp. 303-333 ◽  
Author(s):  
Dia Soilemezi ◽  
Phevos Kallitsis ◽  
Amy Drahota ◽  
John Crossland ◽  
Rebecca Stores ◽  
...  
Keyword(s):  
Qualitative Study ◽  
Home Environment ◽  
Family Carers ◽  
People With Dementia ◽  
The Impact

scholarly journals The impact of volunteering on the volunteer: findings from a peer support programme for family carers of people with dementia

2016 ◽  
Vol 25 (2) ◽  
pp. 548-558 ◽  
Author(s):  
Georgina Charlesworth ◽  
James B. Sinclair ◽  
Alice Brooks ◽  
Theresa Sullivan ◽  
Shaheen Ahmad ◽  
...  
Keyword(s):  
Peer Support ◽  
Family Carers ◽  
Support Programme ◽  
People With Dementia ◽  
The Impact ◽  
Peer Support Programme

Poetry, philosophy and dementia

2016 ◽  
Vol 11 (2) ◽  
pp. 75-80
Author(s):  
Ellen Jones ◽  
Tab Betts
Keyword(s):  
Family Relationships ◽  
Late Stage ◽  
Short Term Memory ◽  
Family Carers ◽  
Content Type ◽  
People With Dementia ◽  
Intrinsic Quality ◽  
The Uk ◽  
Person With Dementia ◽  
The Impact

Purpose – The purpose of this paper is to describe the use of poetry by family carers as a way into the inner world of a person with late stage dementia, consistent with their values, preferences and experiences; enhancing the wellbeing of both the person with dementia and family carers. Design/methodology/approach – The use of poetry is being increasingly recognised as valuable in improving wellbeing for people with dementia. Poetry has an intrinsic quality which is well-suited for people with dementia: it does not require following a storyline and therefore can be enjoyed by those with no short-term memory. Findings – The paper describes the benefits to both family members and the person with dementia; the use of poetry opened up expression of deep emotions, improved communication and enriched family relationships. Research limitations/implications – Use of poetry by family carers with people with late stage dementia is under researched in the UK and further study of the impact of this intervention would be beneficial. Practical implications – Poetry can be used practically in both small groups in care homes or community settings and also one to one by family carers. Of especial value are poems that have been learnt by heart when young. Originality/value – Finally, the paper also draws attention to the positive lessons we can learn from people with dementia.

scholarly journals A phenomenological exploration of the lived experiences of orthopaedic surgeons during the COVID-19 pandemic

2021 ◽  
Vol 103 (5) ◽  
pp. 248-253
Author(s):  
SJ Calder ◽  
L Lawson ◽  
PR Calder
Keyword(s):  
Peer Support ◽  
Well Being ◽  
Phenomenological Approach ◽  
Trauma Centre ◽  
Structured Interviews ◽  
Orthopaedic Surgeons ◽  
The North ◽  
Difficult Time ◽  
The Uk ◽  
The Impact

INTRODUCTION Following the UK government ordering a hard stop of all elective operating within the NHS in March of 2020, the Royal National Orthopaedic Hospital was converted into a trauma centre serving the North Central London region and neighbouring trusts. The aim of this study was to explore the impact on the surgeons’ well-being and performance during this stressful time. METHODOLOGY A descriptive phenomenological approach was used for this study. Eight participants were purposefully selected and informed consent was given by each participant. Semi-structured interviews were undertaken using open questions and probes to stimulate discussion. Colaizzi’s 7 step framework for thematic analysis was used to identify codes and common themes. RESULTS Five main themes were identified. These included: the impact of fear, fear of using personal protective equipment, stress relating to leadership and professionalism of the surgeon, the need for peer support and response to change. CONCLUSIONS This study confirms common areas of concern and anxiety raised by all the surgeons interviewed. The participants developed several coping strategies, including peer support, which has previously been identified as the most important approach in dealing with difficult circumstances. Stress relating to the need for surgical leadership, demonstrated by the rapid organisation of the hospital from a purely elective site to a trauma centre is highlighted. What was apparent from the narratives of the participants was that despite the stress and anxiety felt by them, they remained humble and proud to remain as orthopaedic surgeons treating patients during this difficult time.

scholarly journals Exploration of the impact of the COVID-19 pandemic on people with dementia and carers from black and minority ethnic groups

BMJ Open ◽  
2021 ◽  
Vol 11 (5) ◽  
pp. e050066
Author(s):  
Emily West ◽  
Pushpa Nair ◽  
Yolanda Barrado-Martin ◽  
Kate R Walters ◽  
Nuriye Kupeli ◽  
...  
Keyword(s):  
Qualitative Interviews ◽  
Family Carers ◽  
Multiple Perspectives ◽  
Daily Lives ◽  
People With Dementia ◽  
Minority Ethnic Groups ◽  
Fear And Anxiety ◽  
The Uk ◽  
The Impact ◽  
Minority Ethnic

IntroductionDespite community efforts to support and enable older and vulnerable people during the COVID-19 pandemic, many people with dementia and their family carers are still finding it difficult to adjust their daily living in light of the disruption that the pandemic has caused. There may be needs specific to black, Asian and minority ethnic (BAME) populations in these circumstances that remain thus far unexplored.ObjectiveThe aim of the study was to explore the effects of the COVID-19 pandemic on people living with dementia and their family carers of BAME backgrounds, in relation to their experiences of community dementia care and the impact on their daily lives.Design15 participants (persons with dementia and carers) were recruited for semistructured qualitative interviews. Respondents were of South Asian and Afro-Caribbean backgrounds. We used thematic analysis to analyse our data from a constructivist perspective, which emphasises the importance of multiple perspectives, contexts and values.ResultsThere were a number of ways that the COVID-19 pandemic has impacted BAME persons with dementia and carers with regard to their experiences of dementia community care and the impact on their everyday lives. In particular we identified eight key themes, with subthemes: fear and anxiety, food and eating (encompassing food shopping and eating patterns), isolation and identity, community and social relationships, adapting to COVID-19, social isolation and support structures, and medical interactions. Fear and anxiety formed an overarching theme that encompassed all others.DiscussionThis paper covers unique and underexplored topics in a COVID-19-vulnerable group. There is limited work with these groups in the UK and this is especially true in COVID-19. The results showed that such impacts were far-reaching and affected not only day-to-day concerns, but also care decisions with long-ranging consequences, and existential interests around fear, faith, death and identity.

scholarly journals The Impact of Social Distancing Due to the COVID-19 Pandemic on People with Dementia, Family Carers and Healthcare Professionals: A Qualitative Study

2022 ◽  
Vol 19 (1) ◽  
pp. 519
Author(s):  
Hanneke J. A. Smaling ◽  
Bram Tilburgs ◽  
Wilco P. Achterberg ◽  
Mandy Visser
Keyword(s):  
Qualitative Study ◽  
Home Care ◽  
Healthcare Professionals ◽  
Community Dwelling ◽  
Family Carers ◽  
Term Care ◽  
Social Distancing ◽  
People With Dementia ◽  
The Social ◽  
The Impact

Social distancing measures imposed because of the COVID-19 pandemic presented challenges to the health and wellbeing of people with dementia, family carers, and healthcare professionals. This study investigated the impact of these measures on all involved in the care for people with dementia. For this qualitative study, 20 family carers and 20 healthcare professionals from home care and long-term care (LTC) participated in a semi-structured interview. Interviews were analysed using an inductive thematic analysis approach. For people with dementia, the social distancing measures resulted in a deterioration of physical health. The impact on their emotional state and behaviour depended on the stage of dementia. Family carers experienced difficulty coping with visiting restrictions, anxiety regarding safety, and changes in carer burden. Healthcare professionals had an increased workload, and felt guilty about adhering to restrictive measures. Differences between home care and LTC were reported (i.e., societal initiatives focussed on LTC, scarcity of activities for community-dwelling people with dementia, use of personal protective equipment more intrusive for home care). The social distancing measures had a negative impact on persons with dementia, their family carers, and healthcare professionals. More attention is needed for community-dwelling people with dementia and family carers in times of social isolation.

scholarly journals Taking part in the community occupational therapy in dementia UK intervention from the perspective of people with dementia, family carers and occupational therapists: A qualitative study

Dementia ◽  
2020 ◽  
pp. 147130122098124
Author(s):  
Jane Burgess ◽  
Jennifer Wenborn ◽  
Laura Di Bona ◽  
Martin Orrell ◽  
Fiona Poland
Keyword(s):  
Qualitative Study ◽  
Occupational Therapy ◽  
Occupational Therapists ◽  
Family Carer ◽  
Family Carers ◽  
Structured Interviews ◽  
Usual Practice ◽  
People With Dementia ◽  
Moderate Dementia ◽  
Person With Dementia

Aim Community Occupational Therapy in Dementia (COTiD-UK) is a manualised intervention delivered to the person with dementia and their identified family carer primarily in their own home. The focus is on enabling both the person with dementia and their family carer to engage in personally meaningful activities. This qualitative study examines the experiences of people with mild to moderate dementia, their family carers and occupational therapists, of taking part in the COTiD-UK intervention. Method A purposive sample of 22 pairs of people with dementia and a family carer and seven occupational therapists took part in semi-structured interviews that were audio recorded, transcribed and inductively analysed using thematic analysis. Findings Themes from the occupational therapist interviews relate to the COTiD-UK intervention philosophy and content, aspects of delivering it in practice and thinking ahead to it becoming usual practice. Themes from the pair interviews relate to the focus of COTiD-UK sessions on meaningful occupation and working together and a sense of being able to plan to live well with dementia in the short- and longer-term as a result of the intervention. Conclusion This person-centred occupation-focussed intervention was highly valued by people with dementia and their family carers and the occupational therapists delivering it.

Cancer treatment decisions for people living with dementia: experiences of family carers

2020 ◽  
Vol 70 (suppl 1) ◽  
pp. bjgp20X711545
Author(s):  
Catherine Hynes ◽  
Caroline Mitchell ◽  
Lynda Wyld
Keyword(s):  
Cancer Treatment ◽  
Healthcare Professionals ◽  
Cancer Recurrence ◽  
Treatment Decisions ◽  
Support Needs ◽  
Family Carers ◽  
Structured Interviews ◽  
Power Of Attorney ◽  
Cancer Data ◽  
People With Dementia

BackgroundDementia and cancer are both diseases associated with older age. The National Cancer Data Audit in England found that 4.4% of people diagnosed with cancer also had cognitive impairment. Decisions about cancer treatment can be very complex when someone already has dementia. Often someone’s closest relative may be asked to make decisions on their behalf. Little is known about the psychosocial impact that this has on carers, or what their support needs are during this time.AimTo explore the experiences of family carers who have been involved in making cancer treatment decisions on behalf of a relative with dementia, in particular identifying challenges and support needs.MethodThe authors are conducting semi-structured interviews with carers of people with dementia who have been involved in making decisions about cancer treatment on their behalf. Data is being thematically analysed using an inductive approach. Two researchers will independently verify themes.ResultsThe authors expect to have completed 14–18 interviews and will report their preliminary findings. Family carers experience many difficulties in the context of cancer and dementia, including lack of support when coping with the aftereffects of cancer treatment, lack of awareness among healthcare professionals regarding the authority granted by a lasting power of attorney and the anxiety created by feeling responsible for identifying cancer recurrence.ConclusionThis study will highlight that supporting someone with dementia through cancer treatment, and having to make decisions about it on their behalf, creates unique challenges for carers. Currently there is a significant lack of support for those facing this distressing experience.

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