Drawing on findings of an online survey of 4511 adults, this study explores the levels of public awareness and recognition of carers in families, circles of friends and the workplace; and the extent to which people have confidence in their ability to help carers find support. The study shows that more than half of respondents believe they don’t know a single family member or friend who cares, whilst as many as 3 in 5 workers believe they don’t know ‘any work colleagues’ who help look after a loved one. This despite the fact that 1 in 10 people in the UK are carers and 1 in 9 people in the workforce are juggling their paid job with unpaid caring. Amongst those members of the public who did manage to recognise that a friend or family member looked after someone, as many as 3 in 5 did not ‘suggest where to find further information on caring’ and the number rose to 65% amongst those who knew carers in the workplace. Amongst all of those polled, including those that had not recognised carers in their social circles or at work, two thirds said they would feel confident providing ‘emotional support’ to a new carer. Yet, only 2 in 5 would feel confident pointing people in the direction of information about caring. The findings also revealed differences amongst men and women, carers, and non-carers, and those of different ages: women are more likely to say they know a friend, a family member or a colleague who is a carer compared with men and to have suggested sources of information and support; those aged 45-54 are only slightly more likely to say they have any family or friends that are carers compared with the wider public; and those who have never had an unpaid caring role are more likely to say they don’t have any friends or family who care.
(Edited publisher abstract)
Drawing on findings of an online survey of 4511 adults, this study explores the levels of public awareness and recognition of carers in families, circles of friends and the workplace; and the extent to which people have confidence in their ability to help carers find support. The study shows that more than half of respondents believe they don’t know a single family member or friend who cares, whilst as many as 3 in 5 workers believe they don’t know ‘any work colleagues’ who help look after a loved one. This despite the fact that 1 in 10 people in the UK are carers and 1 in 9 people in the workforce are juggling their paid job with unpaid caring. Amongst those members of the public who did manage to recognise that a friend or family member looked after someone, as many as 3 in 5 did not ‘suggest where to find further information on caring’ and the number rose to 65% amongst those who knew carers in the workplace. Amongst all of those polled, including those that had not recognised carers in their social circles or at work, two thirds said they would feel confident providing ‘emotional support’ to a new carer. Yet, only 2 in 5 would feel confident pointing people in the direction of information about caring. The findings also revealed differences amongst men and women, carers, and non-carers, and those of different ages: women are more likely to say they know a friend, a family member or a colleague who is a carer compared with men and to have suggested sources of information and support; those aged 45-54 are only slightly more likely to say they have any family or friends that are carers compared with the wider public; and those who have never had an unpaid caring role are more likely to say they don’t have any friends or family who care.
(Edited publisher abstract)
Subject terms:
carers, surveys, public opinion, access to information;
International Journal of Geriatric Psychiatry, 32(10), 2017, pp.1104-1113.
Publisher:
Wiley
Objectives: To determine if providing informal care to a co-resident with dementia symptoms places an additional risk on the likelihood of poor mental health or mortality compared with co-resident non-caregivers.
Design: A quasi-experimental design of caregiving and non-caregiving co-residents of individuals with dementia symptoms provides a natural comparator for the additive effects of caregiving on top of living with an individual with dementia symptoms.
Methods: Census records, providing information on household structure, intensity of caregiving, presence of dementia symptoms and self-reported mental health were linked to mortality records over the following 33 months. Multi-level regression models were constructed to determine the risk of poor mental health and death in co-resident caregivers of individuals with dementia symptoms compared with co-resident non-caregivers, adjusting for the clustering of individuals within households.
Results: The cohort consisted of 10 982 co-residents (55.1% caregivers), with 12.1% of non-caregivers reporting poor mental health compared with 8.4% of intense caregivers (>20 h of care per week). During follow-up, the cohort experienced 560 deaths (245 to caregivers). Overall, caregiving co-residents were at no greater risk of poor mental health but had lower mortality risk than non-caregiving co-residents; this lower mortality risk was also seen amongst the most intensive caregivers.
Conclusion: Caregiving poses no additional risk to mental health over and above the risk associated with merely living with someone with dementia and is associated with a lower mortality risk compared with non-caregiving co-residents.
(Edited publisher abstract)
Objectives: To determine if providing informal care to a co-resident with dementia symptoms places an additional risk on the likelihood of poor mental health or mortality compared with co-resident non-caregivers.
Design: A quasi-experimental design of caregiving and non-caregiving co-residents of individuals with dementia symptoms provides a natural comparator for the additive effects of caregiving on top of living with an individual with dementia symptoms.
Methods: Census records, providing information on household structure, intensity of caregiving, presence of dementia symptoms and self-reported mental health were linked to mortality records over the following 33 months. Multi-level regression models were constructed to determine the risk of poor mental health and death in co-resident caregivers of individuals with dementia symptoms compared with co-resident non-caregivers, adjusting for the clustering of individuals within households.
Results: The cohort consisted of 10 982 co-residents (55.1% caregivers), with 12.1% of non-caregivers reporting poor mental health compared with 8.4% of intense caregivers (>20 h of care per week). During follow-up, the cohort experienced 560 deaths (245 to caregivers). Overall, caregiving co-residents were at no greater risk of poor mental health but had lower mortality risk than non-caregiving co-residents; this lower mortality risk was also seen amongst the most intensive caregivers.
Conclusion: Caregiving poses no additional risk to mental health over and above the risk associated with merely living with someone with dementia and is associated with a lower mortality risk compared with non-caregiving co-residents.
(Edited publisher abstract)
This booklet provides information for unpaid carers who identify as lesbian, gay, bisexual, trans* or queer (LGBTQ+), looks at the additional challenges they face and outlines what support is available. It includes help on identifying as a carer, managing the caring journey and accessing support, as well as information on end-of-life affairs. It also includes the real stories of LGBTQ+ carers
(Edited publisher abstract)
This booklet provides information for unpaid carers who identify as lesbian, gay, bisexual, trans* or queer (LGBTQ+), looks at the additional challenges they face and outlines what support is available. It includes help on identifying as a carer, managing the caring journey and accessing support, as well as information on end-of-life affairs. It also includes the real stories of LGBTQ+ carers across Wales, who have benefited from support.
(Edited publisher abstract)
Subject terms:
carers, LGBT people, user views, access to services;
Explores public perceptions of how unpaid care is valued by society and their expectations of becoming a carer. The poll also looked at what would worry people if they took on a caring role and where they would go for support. The vast majority of the UK public feel those caring unpaid are not sufficiently valued by society. More than 7 in 10 of the UK public feel carers are not sufficiently
(Edited publisher abstract)
Explores public perceptions of how unpaid care is valued by society and their expectations of becoming a carer. The poll also looked at what would worry people if they took on a caring role and where they would go for support. The vast majority of the UK public feel those caring unpaid are not sufficiently valued by society. More than 7 in 10 of the UK public feel carers are not sufficiently valued by society for the support they provide and this figure rises to 8 in 10 of those who have previous experience of caring themselves but don’t currently. The public are not prepared for a future caring role. Half of respondents with no experience of caring think it’s unlikely they would ever become a carer. When asked to choose, their top three worries about becoming a carer were affordability of care, the impact on their finances and coping with the stress of caring.
(Edited publisher abstract)
This short document has been developed for employers, to highlight the issues surrounding working carers and how supporting them effectively can be good for business. The top tips detail actions employers can take to ensure that carers are supported within the workplace. They include: get to know which of your employees are working carers; identify leaders for working carers within your organisation; develop and/or review your workplace support and policies, in order to ensure that they are flexible, responsive and explicitly support working carers; ensure that support is in place and is clearly communicated to all staff; equip your mangers to support working carers and make sure they do so; create opportunities for working carers to support one another; ensure job opportunities and promotions are flexible, and support applications from working carers; monitor, evaluate and review your approaches to supporting working carers; and communicate clearly that you are a working carer friendly employer, and what additional support you offer.
(Edited publisher abstract)
This short document has been developed for employers, to highlight the issues surrounding working carers and how supporting them effectively can be good for business. The top tips detail actions employers can take to ensure that carers are supported within the workplace. They include: get to know which of your employees are working carers; identify leaders for working carers within your organisation; develop and/or review your workplace support and policies, in order to ensure that they are flexible, responsive and explicitly support working carers; ensure that support is in place and is clearly communicated to all staff; equip your mangers to support working carers and make sure they do so; create opportunities for working carers to support one another; ensure job opportunities and promotions are flexible, and support applications from working carers; monitor, evaluate and review your approaches to supporting working carers; and communicate clearly that you are a working carer friendly employer, and what additional support you offer.
(Edited publisher abstract)
Subject terms:
employment, carers, good practice, conditions of employment;
Journal of Mental Health, 26(2), 2017, pp.134-141.
Publisher:
Taylor and Francis
Place of publication:
London
Background: Shortened life expectancy of people with mental illness is now widely known and the focus of research and policy activity. To date, research has primarily reflected perspectives of health professionals with limited attention to the views and opinions of those most closely affected. The voice of carers is particularly minimal, despite policy stipulating carer participation is required for mental health services.
Aim: To present views and opinions of carers regarding physical health of the people they care for.
Methods: Qualitative exploratory. Two focus groups and one individual interview were conducted with 13 people identifying as carers of a person with mental illness. Research was conducted in the Australian Capital Territory. Data analysis was based on the thematic framework of Braun and Clarke.
Results: Two main themes were interaction between physical and mental health; and, carers’ own physical and mental health. Participants described the impact of mental illness and its treatments on physical health, including their own.
Conclusions: Carers are acknowledged as crucial for the delivery of high quality mental health services. Therefore they have an important role to play
(Publisher abstract)
Background: Shortened life expectancy of people with mental illness is now widely known and the focus of research and policy activity. To date, research has primarily reflected perspectives of health professionals with limited attention to the views and opinions of those most closely affected. The voice of carers is particularly minimal, despite policy stipulating carer participation is required for mental health services.
Aim: To present views and opinions of carers regarding physical health of the people they care for.
Methods: Qualitative exploratory. Two focus groups and one individual interview were conducted with 13 people identifying as carers of a person with mental illness. Research was conducted in the Australian Capital Territory. Data analysis was based on the thematic framework of Braun and Clarke.
Results: Two main themes were interaction between physical and mental health; and, carers’ own physical and mental health. Participants described the impact of mental illness and its treatments on physical health, including their own.
Conclusions: Carers are acknowledged as crucial for the delivery of high quality mental health services. Therefore they have an important role to play in addressing the poor physical health of people with mental illness. Hearing their views and opinions is essential.
(Publisher abstract)
Subject terms:
carers, mental health problems, medication, user views;
Background: Mental illness is a disease that affects millions of people every year. It not only causes stress to the mentally ill patients, but also for the family members who provide them the care. The family caregivers, therefore need some form of coping strategies in dealing with their mentally ill family members.
Aims: This qualitative study aims at identifying and analysing the coping strategies adopted by the family caregivers in dealing with their mentally ill family members.
Method: A total of 15 family caregivers from the state of Kedah, Malaysia participated in the face-to-face semi structured interview.
Results: The study findings identified an array of coping strategies used by the family caregivers, including religious coping, emotional coping, acceptance, becoming engaged in leisure activities, and the use of traditional healing to help them cope with their mentally ill members.
Suggestions and conclusions: Study suggests that the family caregivers should engage themselves in social support groups to learn about and obtain the positive coping strategies used by other caregivers who have similar experiences in caring for the mentally ill. Study also suggests that they should get appropriate training from the mental health professionals in order to enhance the caregivers’ coping skills.
(Publisher abstract)
Background: Mental illness is a disease that affects millions of people every year. It not only causes stress to the mentally ill patients, but also for the family members who provide them the care. The family caregivers, therefore need some form of coping strategies in dealing with their mentally ill family members.
Aims: This qualitative study aims at identifying and analysing the coping strategies adopted by the family caregivers in dealing with their mentally ill family members.
Method: A total of 15 family caregivers from the state of Kedah, Malaysia participated in the face-to-face semi structured interview.
Results: The study findings identified an array of coping strategies used by the family caregivers, including religious coping, emotional coping, acceptance, becoming engaged in leisure activities, and the use of traditional healing to help them cope with their mentally ill members.
Suggestions and conclusions: Study suggests that the family caregivers should engage themselves in social support groups to learn about and obtain the positive coping strategies used by other caregivers who have similar experiences in caring for the mentally ill. Study also suggests that they should get appropriate training from the mental health professionals in order to enhance the caregivers’ coping skills.
(Publisher abstract)
Subject terms:
carers, mental health problems, families, coping behaviour;
Journal of Human Behavior in the Social Environment, 27(4), 2017, pp.311-320.
Publisher:
Taylor and Francis
Place of publication:
Philadelphia, USA
Providing care for family members is a life event that both reflects and influences family dynamics. Caregiving careers, or the length of time a person provides care, are characterised by a series of transitions to which they must continuously adapt. Women are more likely than men to assume the caregiver role and this role encompasses gender inequalities associated with work and caregiving expectations. This article presents qualitative data from interviews conducted with caregivers who participated in a community-based supportive services program. The experiences of these women provide insight into how caregivers transition into their role, strategies for supporting new and experienced caregivers, and their concerns for their future. Developmental and gendered perspectives of caregiving were used as a context to analyse their experiences.
(Publisher abstract)
Providing care for family members is a life event that both reflects and influences family dynamics. Caregiving careers, or the length of time a person provides care, are characterised by a series of transitions to which they must continuously adapt. Women are more likely than men to assume the caregiver role and this role encompasses gender inequalities associated with work and caregiving expectations. This article presents qualitative data from interviews conducted with caregivers who participated in a community-based supportive services program. The experiences of these women provide insight into how caregivers transition into their role, strategies for supporting new and experienced caregivers, and their concerns for their future. Developmental and gendered perspectives of caregiving were used as a context to analyse their experiences.
(Publisher abstract)
Health and Social Care in the Community, 25(2), 2017, pp.548-558.
Publisher:
Wiley
With an ageing population, there are increasing numbers of experienced family carers (FCs) who could provide peer support to newer carers in a similar care situation. The aims of this paper are to: (i) use a cross-sectional study design to compare characteristics of volunteers and recipients of a peer support programme for FCs of people with dementia, in terms of demographic background, social and autonomy and a positive correlation between the volunteers' duration of involvement and perceived well-being. These findings suggest that carers who volunteer for emotional support roles are resilient and are at little psychological risk from volunteering.
(Publisher abstract)
With an ageing population, there are increasing numbers of experienced family carers (FCs) who could provide peer support to newer carers in a similar care situation. The aims of this paper are to: (i) use a cross-sectional study design to compare characteristics of volunteers and recipients of a peer support programme for FCs of people with dementia, in terms of demographic background, social networks and psychological well-being; and (ii) use a longitudinal study design to explore the overall impact of the programme on the volunteers in terms of psychological well-being. Data were collected from programmes run in Norfolk, Northamptonshire, Berkshire and four London boroughs between October 2009 and March 2013. The volunteer role entailed empathic listening and encouragement over a 10-month period. Both carer support volunteers (N = 87) and recipient FCs (N = 109) provided baseline demographic information. Data on social networks, personal growth, self-efficacy, service use and well-being (SF-12; EuroQol Visual Analogue Scale; Hospital Anxiety and Depression Scale; Control, Autonomy, Self-Realisation, Pleasure-19) were collected prior to the start of the intervention (N = 43) and at either 3- to 5 month or 10 month follow-up (N = 21). Volunteers were more likely than recipients of support to be female and to have cared for a parent/grandparent rather than spouse. Volunteers were also more psychologically well than support recipients in terms of personal growth, depression and perceived well-being. The longitudinal analysis identified small but significant declines in personal growth and autonomy and a positive correlation between the volunteers' duration of involvement and perceived well-being. These findings suggest that carers who volunteer for emotional support roles are resilient and are at little psychological risk from volunteering.
(Publisher abstract)
Alzheimer’s and Dementia, 13(5), 2017, pp.572-581.
Publisher:
Elsevier
Introduction: Family carers of people with dementia are their most important support in practical, personal, and economic terms. Carers are vital to maintaining the quality of life (QOL) of people with dementia. This review aims to identify factors related to the QOL of family carers of people with dementia. Methods: Searches on terms including “carers,” “dementia,” “family,” and “quality
(Edited publisher abstract)
Introduction: Family carers of people with dementia are their most important support in practical, personal, and economic terms. Carers are vital to maintaining the quality of life (QOL) of people with dementia. This review aims to identify factors related to the QOL of family carers of people with dementia. Methods: Searches on terms including “carers,” “dementia,” “family,” and “quality of life” in research databases. Findings were synthesized inductively, grouping factors associated with carer QOL into themes. Results: A total of 909 abstracts were identified. Following screening, lateral searches, and quality appraisal, 41 studies (n = 5539) were included for synthesis. A total of 10 themes were identified: demographics; carer–patient relationship; dementia characteristics; demands of caring; carer health; carer emotional well-being; support received; carer independence; carer self-efficacy; and future. Discussion: The quality and level of evidence supporting each theme varied. We need further research on what factors predict carer QOL in dementia and how to measure it.
(Edited publisher abstract)
Subject terms:
quality of life, dementia, carers, systematic reviews, family members;