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.

Models of home care services for persons with dementia: a narrative review

2015 ◽  
Vol 27 (10) ◽  
pp. 1593-1600 ◽  
Author(s):  
Lee-Fay Low ◽  
Jennifer Fletcher
Keyword(s):  
Case Management ◽  
Home Care ◽  
Integrated Care ◽  
Community Dwelling ◽  
Narrative Review ◽  
Nursing Home Admission ◽  
Community Based ◽  
People With Dementia ◽  
The Impact ◽  
Community Based Services

ABSTRACTBackground:Worldwide trends of increasing dementia prevalence, have put economic and workforce pressures to shifting care for persons with dementia from residential care to home care.Methods:We reviewed the effects of the four dominant models of home care delivery on outcomes for community-dwelling persons with dementia. These models are: case management, integrated care, consumer directed care, and restorative care. This narrative review describes benefits and possible drawbacks for persons with dementia outcomes and elements that comprise successful programs.Results:Case management for persons with dementia may increase use of community-based services and delay nursing home admission. Integrated care is associated with greater client satisfaction, increased use of community based services, and reduced hospital days however the clinical impacts on persons with dementia and their carers are not known. Consumer directed care increases satisfaction with care and service usage, but had little effect on clinical outcomes. Restorative models of home care have been shown to improve function and quality of life however these trials have excluded persons with dementia, with the exception of a pilot study.Conclusions:There has been a little research into models of home care for people with dementia, and no head-to-head comparison of the different models. Research to inform evidence-based policy and service delivery for people with dementia needs to evaluate both the impact of different models on outcomes, and investigate how to best deliver these models to maximize outcomes.

scholarly journals Involving people with dementia and their carers in dementia education for undergraduate healthcare professionals: a qualitative study of motivation to participate and experience

2018 ◽  
Vol 31 (06) ◽  
pp. 869-876 ◽  
Author(s):  
Zoe Cashin ◽  
Stephanie Daley ◽  
Molly Hebditch ◽  
Leila Hughes ◽  
Sube Banerjee
Keyword(s):  
Qualitative Study ◽  
Family Involvement ◽  
Healthcare Professionals ◽  
Qualitative Interviews ◽  
Therapeutic Benefits ◽  
People With Dementia ◽  
Motivation To Participate ◽  
Face Time ◽  
The Impact ◽  
Dementia Education

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.

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 Supporting family carers providing end‐of‐life home care: a qualitative study on the impact of a hospice at home service

2014 ◽  
Vol 24 (1-2) ◽  
pp. 131-140 ◽  
Author(s):  
Barbara A Jack ◽  
Mary R O'Brien ◽  
Joyce Scrutton ◽  
Catherine R Baldry ◽  
Karen E Groves
Keyword(s):  
Qualitative Study ◽  
Home Care ◽  
End Of Life ◽  
Family Carers ◽  
Home Service ◽  
Hospice At Home ◽  
The Impact ◽  
At Home

scholarly journals The Experiences of Home Care Nurses in Regard to the Care of Vulnerable Populations: A Qualitative Study

Healthcare ◽  
2021 ◽  
Vol 10 (1) ◽  
pp. 21
Author(s):  
Isabel María Fernández-Medina ◽  
María Dolores Ruíz-Fernández ◽  
Felisa Gálvez-Ramírez ◽  
Evangelina Martínez-Mengíbar ◽  
Manuel Eduardo Ruíz-García ◽  
...  
Keyword(s):  
Qualitative Study ◽  
Home Care ◽  
Vulnerable Populations ◽  
Vulnerable Population ◽  
Structured Interviews ◽  
Continuous Care ◽  
Vulnerable Patients ◽  
The Social ◽  
The Impact ◽  
Home Care Nurses

Home care nurses have become the main references in home care for vulnerable patients. In patients’ homes they offer comprehensive and continuous care to both the vulnerable population and their families. The aim of this qualitative study was to explore experiences and perspectives of home care nurses regarding the care of vulnerable patients in Spain. We conducted in-depth semi-structured interviews with 15 home care nurses working with a vulnerable population. From a data analysis, two themes and four subthemes emerged: (1) “barriers to providing home care to vulnerable populations”, with the following subthemes: “the particularities of the patient and their home caregivers” and “perceived barriers for the involvement of home care nurses in the care”; and (2) “the emotional cost of home care” with the subthemes “home care is draining for caregivers” and “the impact of home care on the home care nurses”. These findings show us that nurses face a number of difficulties in home care for vulnerable patients. The training of nurses in certain competencies and skills by the social health services would enhance the quality of care offered to these patients.

scholarly journals Exploring how people with dementia can be best supported to manage long-term conditions: a qualitative study of stakeholder perspectives

BMJ Open ◽  
2020 ◽  
Vol 10 (10) ◽  
pp. e041873
Author(s):  
Jessica Laura Rees ◽  
Alexandra Burton ◽  
Kate R Walters ◽  
Monica Leverton ◽  
Penny Rapaport ◽  
...  
Keyword(s):  
Physical Health ◽  
Healthcare Professionals ◽  
Best Interests ◽  
Self Management ◽  
Family Carers ◽  
Long Term Conditions ◽  
Care Network ◽  
People With Dementia ◽  
The Impact

ObjectivesTo explore how the self-management of comorbid long-term conditions is experienced and negotiated by people with dementia and their carers.DesignSecondary thematic analysis of 82 semi-structured interviews.SettingCommunity settings across the United Kingdom.Participants11 people with dementia, 22 family carers, 19 health professionals and 30 homecare staff.ResultsWe identified three overarching themes: (1) The process of substituting self-management: stakeholders balanced the wishes of people with dementia to retain autonomy with the risks of lower adherence to medical treatments. The task of helping a person with dementia to take medication was perceived as intermediate between a personal care and a medical activity; rules about which professionals could perform this activity sometimes caused conflict. (2) Communication in the care network: family carers often communicated with services and made decisions about how to implement medical advice. In situations where family carers or homecare workers were not substituting self-management, it could be challenging for general practitioners to identify changes in self-management and decide when to intervene. (3) Impact of physical health on and from dementia: healthcare professionals acknowledged the inter-relatedness of physical health and cognition to adapt care accordingly. Some treatments prescribed for long-term conditions were perceived as unhelpful when not adapted to the context of dementia. Healthcare professionals and homecare workers sometimes felt that family carers were unable to accept that available treatments may not be helpful to people with dementia and that this sometimes led to the continuation of treatments of questionable benefit.ConclusionThe process of substituting self-management evolves with advancement of dementia symptoms and relies on communication in the care network, while considering the impact on and from dementia to achieve holistic physical health management. Care decisions must consider people with dementia as a whole, and be based on realistic outcomes and best interests.

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.

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.

scholarly journals ‘Getting back to normality seems as big of a step as going into lockdown’: the impact of the COVID-19 pandemic on people with early to middle stage dementia

2021 ◽  
Author(s):  
Catherine V Talbot ◽  
Pam Briggs
Keyword(s):  
Well Being ◽  
Cognitive Stimulation ◽  
Social Worlds ◽  
Middle Stage ◽  
People With Dementia ◽  
The Social ◽  
Function Loss ◽  
The Government ◽  
Person With Dementia ◽  
The Impact

Abstract People with dementia can experience shrinkage of their social worlds, leading to a loss of independence, control and reduced well-being. We used ‘the shrinking world’ theory to examine how the COVID 19 pandemic has impacted the lives of people with early to middle stage dementia and what longer-term impacts may result. Interviews were conducted with 19 people with dementia and a thematic analysis generated five themes: the forgotten person with dementia, confusion over government guidance, deterioration of cognitive function, loss of meaning and social isolation, safety of the lockdown bubble. The findings suggest that the pandemic has accelerated the ‘shrinking world’ effect and created tension in how people with dementia perceive the outside world. Participants felt safe and secure in lockdown but also missed the social interaction, cognitive stimulation and meaningful activities that took place outdoors. As time in lockdown continued, these individuals experienced a loss of confidence and were anxious about their ability to re-engage in the everyday practises that allow them to participate in society. We recommend ways in which the government, communities and organisations might counteract some of the harms posed by this shrinking world.

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