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 ◽  
...  
Author(s):  
Hanneke J. A. Smaling ◽  
Bram Tilburgs ◽  
Wilco P. Achterberg ◽  
Mandy Visser

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.


Dementia ◽  
2021 ◽  
pp. 147130122110590
Author(s):  
Emily Cousins ◽  
Kay de Vries ◽  
Karen Harrison Dening

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.


Author(s):  
Elena de Andrés-Jiménez ◽  
Rosa Mª Limiñana-Gras ◽  
Encarna Fernández-Ros

The aim of this study is to determine the existence of a characteristic personality profile of family carers of people with dementia. The correct knowledge and use of psychological variables which affect the carer, helps to promote appropriate actions to mitigate the impact of care and improve the carer’s quality of life and likewise the one of the person cared for. The study population consists of 69 family carers of people with dementia, members of various associations and care centers. The results allow us to identify a characteristic personality profile for these carers and it reveals a specific psychological working in this sample, although we cannot directly relate it with the tasks of caring for people with this disease, this profile gives us very relevant information to pay more attention to the needs of this group. Moreover, the analysis of personality styles depends on the sex of the family carer, showing, once again, that the woman is in a situation of most vulnerability.


2018 ◽  
Vol 31 (06) ◽  
pp. 869-876 ◽  
Author(s):  
Zoe Cashin ◽  
Stephanie Daley ◽  
Molly Hebditch ◽  
Leila Hughes ◽  
Sube Banerjee

ABSTRACTBackground:There is a need to improve dementia education to prepare future generations of healthcare professionals to deal with the increasing challenges they will face. Time for Dementia is an innovative undergraduate education program for medical, nursing, and paramedic students in the south of England. Success of the program is dependent upon the participation of families (people with dementia and their carers). This qualitative study seeks to explore the motivation and experiences of the families taking part in the program.Methods:A topic guide was developed to understand factors influencing motivation and retention. A purposeful sample of participant families, who had at least 12 months of involvement in the program, were selected from a cohort of 282 families and were invited to take part in an in-depth qualitative interview. Interviews were audio recorded, transcribed verbatim, and analyzed using thematic analysis. This was subsequently refined in an on-going process of analysis aided by the use of Nvivo 11. Interviewing stopped when thematic saturation was reached.Results:Eighteen families took part in an in-depth qualitative interviews. Four themes were identified from the analysis. These themes were motivators, value to family, value to the person with dementia, and student factors.Conclusions:This study identifies underpinning factors that motivate families to join dementia education programs and the impact of such programs upon them. We found that engagement in such programs can have therapeutic benefits to participants, and do not cause harm. These findings can be used to strengthen recruitment and enhance family involvement in similar programs.


2012 ◽  
Vol 12 (1) ◽  
Author(s):  
Fiona J Jurgens ◽  
Philip Clissett ◽  
John RF Gladman ◽  
Rowan H Harwood

Dementia ◽  
2018 ◽  
Vol 18 (2) ◽  
pp. 776-784 ◽  
Author(s):  
Tanya Hobden ◽  
Mary Swallow ◽  
Charlotte Beer ◽  
Tom Dening

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.


2019 ◽  
Vol 216 (1) ◽  
pp. 35-42 ◽  
Author(s):  
Gill Livingston ◽  
Monica Manela ◽  
Aidan O'Keeffe ◽  
Penny Rapaport ◽  
Claudia Cooper ◽  
...  

BackgroundThe START (STrAtegies for RelaTives) intervention reduced depressive and anxiety symptoms of family carers of relatives with dementia at home over 2 years and was cost-effective.AimsTo assess the clinical effectiveness over 6 years and the impact on costs and care home admission.MethodWe conducted a randomised, parallel group, superiority trial recruiting from 4 November 2009 to 8 June 2011 with 6-year follow-up (trial registration: ISCTRN 70017938). A total of 260 self-identified family carers of people with dementia were randomised 2:1 to START, an eight-session manual-based coping intervention delivered by supervised psychology graduates, or to treatment as usual (TAU). The primary outcome was affective symptoms (Hospital Anxiety and Depression Scale, total score (HADS-T)). Secondary outcomes included patient and carer service costs and care home admission.ResultsIn total, 222 (85.4%) of 173 carers randomised to START and 87 to TAU were included in the 6-year clinical efficacy analysis. Over 72 months, compared with TAU, the intervention group had improved scores on HADS-T (adjusted mean difference −2.00 points, 95% CI −3.38 to −0.63). Patient-related costs (START versus TAU, respectively: median £5759 v. £16 964 in the final year; P = 0.07) and carer-related costs (median £377 v. £274 in the final year) were not significantly different between groups nor were group differences in time until care home (intensity ratio START:TAU was 0.88, 95% CI 0.58–1.35).ConclusionsSTART is clinically effective and this effect lasts for 6 years without increasing costs. This is the first intervention with such a long-term clinical and possible economic benefit and has potential to make a difference to individual carers.Declarations of interestG.L., Z.W. and C.C. are supported by the UCLH National Institute for Health Research (NIHR) Biomedical Research Centre. G.L. and P.R. were in part supported by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) North Thames at Bart's Health NHS Trust. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health. Z.W. reports during the conduct of the study; personal fees from GE Healthcare, grants from GE Healthcare, grants from Lundbeck, other from GE Healthcare, outside the submitted work.


Author(s):  
Elena de Andrés-Jiménez ◽  
Rosa Mª Limiñana-Gras ◽  
Encarna Fernández-Ros

The aim of this study is to determine the existence of a characteristic personality profile of family carers of people with dementia. The correct knowledge and use of psychological variables which affect the carer, helps to promote appropriate actions to mitigate the impact of care and improve the carer’s quality of life and likewise the one of the person cared for. The study population consists of 69 family carers of people with dementia, members of various associations and care centers. The results allow us to identify a characteristic personality profile for these carers and it reveals a specific psychological working in this sample, although we cannot directly relate it with the tasks of caring for people with this disease, this profile gives us very relevant information to pay more attention to the needs of this group. Moreover, the analysis of personality styles depends on the sex of the family carer, showing, once again, that the woman is in a situation of most vulnerability.


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