An analysis of carer burden among family carers of people with and without dementia in Ireland

2020 ◽  
pp. 1-12
Author(s):  
Áine Teahan ◽  
Attracta Lafferty ◽  
John Cullinan ◽  
Gerard Fealy ◽  
Eamon O’Shea
Keyword(s):  
Older People ◽  
Well Being ◽  
Self Report ◽  
Care Recipient ◽  
Family Carer ◽  
Family Carers ◽  
Dementia Diagnosis ◽  
Carer Burden ◽  
People With Dementia ◽  
Original Dataset

ABSTRACT Objective: Despite the policy relevance of carer burden, limited research focuses on family carers’ experience of carer burden among different disease groups. This study aimed to examine differences in carer burden among family carers of people with and without dementia. Design: Secondary data analysis was conducted on a national cross-sectional dataset. Multivariable ordered logistic regression was used to analyze four levels of carer burden (low, mild, moderate, high). The main independent variable was dementia diagnosis, and controls included variables relating to the care recipient, family carer, and context of care. Setting: The original survey was funded by Irish Health Service Executive and undertaken by the National Centre for the Protection of Older People in Ireland. Participants: The original dataset consisted of 2,311 family carers of older people in Ireland. Approximately, one-fifth of this sample had a diagnosis of dementia. Measurements: Carer burden was measured using the standardized 22-item Zarit Burden Interview. Care-recipient dependency was measured using the Activities for Daily Living Scale. Sociodemographic details and information about the context of caring were collected using self-report scales. Results: In our model, dementia diagnosis and dependency level were significantly associated with carer burden. Family carer and context of care variables including gender, marital status, education, residence, co-residence, and perceived support showed significant relationships with carer burden. Our results highlighted significant differences in carer burden distribution; in particular, family carers of people with dementia were less likely to report low or mild carer burden (−6.95 ppts and −3.64 ppts, respectively) and more likely to report moderate or high carer burden (8.46 ppts and 2.13 ppts, respectively). Conclusion: Our findings suggest that family carers of people with dementia may experience additional challenges associated with caring. Therefore, family carers of people with dementia may require tailored social supports to maintain good health and well-being.

scholarly journals There's no apprenticeship for Alzheimer's: the caring relationship when an older person experiencing dementia falls

2011 ◽  
Vol 32 (5) ◽  
pp. 873-896 ◽  
Author(s):  
ANNE MCINTYRE ◽  
FRANCES REYNOLDS
Keyword(s):  
Older People ◽  
Interpretative Phenomenological Analysis ◽  
Care Recipient ◽  
Term Care ◽  
Everyday Activity ◽  
Carer Burden ◽  
People With Dementia ◽  
Caring Relationship ◽  
Serious Injury ◽  
The Impact

ABSTRACTOlder people experiencing dementia are twice as likely to fall with consequences of serious injury, reduction in everyday activity, admission to long-term care and mortality. Carers of people with dementia are themselves at greater risk of physical and mental ill health, which increases as the dementia progresses. Unsurprisingly, carer burden also increases when a care-recipient falls. The aim of this study was to explore the experiences of falling of community-living older people with dementia and their carers. A qualitative approach was taken using interpretative phenomenological analysis. Nine older people with predominantly Alzheimer's disease and their ten carers were recruited from a large mental health National Health Service trust and participated in one-to-one and joint in-depth interviews. Three dyads participated in repeat interviews. Three focus groups were also carried out, with nine older people experiencing memory problems and 12 carers from a local Alzheimer's Society branch. The antecedents, falls events and consequences of falls were discussed. This paper reports specifically on the impact of falls on the caring relationship. Three themes emerged: ‘learning as you go’, ‘we're always together’, ‘nobody was interested’. The findings demonstrate how falling accentuates the impact of dementia on the dyad. Spouse-carers' discussion of their own falls emphasise the need for joint assessment of health and wellbeing to reduce carer burden and preserve the couplehood of the dyad.

scholarly journals Cross-sectional study evaluating burden and depressive symptoms in family carers of persons with age-related macular degeneration in Australia

BMJ Open ◽  
2021 ◽  
Vol 11 (9) ◽  
pp. e048658
Author(s):  
Ivan Jin ◽  
Diana Tang ◽  
Jessica Gengaroli ◽  
Kathryn Nicholson Perry ◽  
George Burlutsky ◽  
...  
Keyword(s):  
Depressive Symptoms ◽  
Cross Sectional Study ◽  
Age Related Macular Degeneration ◽  
Care Recipient ◽  
Family Carer ◽  
Family Carers ◽  
Cross Sectional ◽  
Carer Burden ◽  
Age Related ◽  
Registration Number

ObjectivesWe aimed to analyse the degree of carer burden and depressive symptoms in family carers of persons with age-related macular degeneration (AMD) and explore the factors independently associated with carer burden and depressive symptoms.MethodsCross-sectional study using self-administered and interviewer-administered surveys, involving 96 family carer–care recipient pairs. Participants were identified from tertiary ophthalmology clinics in Sydney, Australia, as well as the Macular Disease Foundation of Australia database. Logistic regression, Pearson and Spearman correlation analyses were used to investigate associations of explanatory factors (family caregiving experience, carer fatigue, carer quality of life and care-recipient level of dependency) with study outcomes—carer burden and depressive symptoms.ResultsOver one in two family carers reported experiencing mild or moderate-severe burden. More than one in five and more than one in three family carers experienced depressive symptoms and substantial fatigue, respectively. High level of care-recipient dependency was associated with greater odds of moderate-severe and mild carer burden, multivariable-adjusted OR 8.42 (95% CI 1.88 to 37.60) and OR 4.26 (95% CI 1.35 to 13.43), respectively. High levels of fatigue were associated with threefold greater odds of the carer experiencing depressive symptoms, multivariable-adjusted OR 3.47 (95% CI 1.00 to 12.05).ConclusionsA substantial degree of morbidity is observed in family carers during the caregiving experience for patients with AMD. Level of dependency on the family carer and fatigue were independently associated with family carer burden and depressive symptoms.Trial registration numberThe trial registration number is ACTRN12616001461482. The results presented in this paper are Pre-results stage.

scholarly journals Understanding the Link between Family Caregiver Quality of Life and the Care Provided to Older People With Dementia

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 153-154
Author(s):  
Afeez Hazzan
Keyword(s):  
Quality Of Life ◽  
Quality Of Care ◽  
Older People ◽  
Family Caregivers ◽  
Family Caregiver ◽  
Well Being ◽  
The United States ◽  
People With Dementia ◽  
The Impact

Abstract Dementia is one of the most rapidly growing diseases in the United States. In 2018, the direct costs to American society of caring for older people with dementia was approximately $277 billion. Primary informal caregivers are mainly responsible for the care of older people with dementia including Alzheimer’s disease. Caregivers perform a myriad of duties ranging from shopping for their loved ones’ groceries, helping with medications, and managing finances. The caregiving role becomes more demanding as the disease progresses over time, and studies have shown that the quality-of-life (QoL) experienced by caregivers of older adults who have dementia is lower than the QoL of caregivers for older people who do not have dementia. To the best of our knowledge, there has been no research conducted to investigate whether lower caregiver QoL affects the level or quality of care that caregivers provide to persons with dementia. In the current study, we interviewed family caregivers living in Rochester, New York to inquire about their quality of life and the care provided to older people living with dementia. Further, caregivers completed the 36-item Short Form Health Survey (SF-36) as well as a draft questionnaire for measuring the quality of care provided to older people living with dementia. Both quantitative and qualitative findings from this study reveals important relationships between family caregiver QoL and the care provided, including the impact of social support and financial well-being. The study findings could have significant impact, particularly for the provision of much needed support for family caregivers.

Factors Affecting the Level of Depression and Life Satisfaction of Family Caregivers of Frail Older People in Korea

2006 ◽  
Vol 5 (3) ◽  
pp. 399-408 ◽  
Author(s):  
Soo Young Kim ◽  
So Young Min
Keyword(s):  
Older People ◽  
Family Caregivers ◽  
Well Being ◽  
Family Carers ◽  
Frail Older People ◽  
Family Structures ◽  
Factors Affecting ◽  
Aged Society ◽  
Major Factors

South Korea is rapidly becoming an aged society and with changing family structures there is increasing concern about the care of older people. This paper considers the well being of family carers of older people who suffer from dementia or a stroke. One hundred and sixty eight family caregivers, who were caring for elderly relatives, were selected and the major factors affecting their psychological well-being and proposals to improve their quality of life are identified and discussed.

Abuse of people with dementia

2009 ◽  
Vol 19 (1) ◽  
pp. 35-43 ◽  
Author(s):  
Amber Selwood ◽  
Claudia Cooper
Keyword(s):  
Older Adults ◽  
General Population ◽  
Older People ◽  
Memory Impairment ◽  
Social Care ◽  
Care Recipient ◽  
People With Dementia ◽  
Health And Social Care ◽  
Vulnerable People ◽  
With Memory

SummaryPeople with dementia are particularly vulnerable to abuse. It is inherently difficult to study as it is a hidden offence, perpetrated against vulnerable people with memory impairment, by those on whom they depend. In the general population, 6% of older people have experienced abuse in the last month and this rises to approximately 25% in vulnerable populations such as people with dementia. We know that various factors in the carer and the care recipient can predispose to a higher rate of abuse and this knowledge can be harnessed to try and improve prevention. There are also valid and reliable scales available to help detect abuse in vulnerable older adults. All health and social care professionals have a responsibility to act on any suspicion or evidence of significant abuse or neglect in order to ensure that appropriate management is taken.

scholarly journals Older People With Dementia Running a Pop-Up Restaurant: How to Use Reality Shows to Reduce the Stigma of Dementia

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 181-181
Author(s):  
Wenqian Xu
Keyword(s):  
Risk Factor ◽  
Older People ◽  
Family Caregivers ◽  
Social Engagement ◽  
Signs And Symptoms ◽  
Later Life ◽  
Personal Goals ◽  
Family Carers ◽  
Reality Show ◽  
People With Dementia

Abstract The present study focused on a Chinese reality show, Forget Me Not Café, which brought together five older people (aged 65 and older) living with dementia to run a pop-up restaurant and intended to reduce the stigma of dementia. The study aims to explore how the reality-show participants describe dementia in older people and how their views relate to the macrosocial context of dementia and older people. This study performed a thematic discourse analysis on the written and spoken content about dementia in older people (or later life) presented in the reality show. Four discursive themes were identified including: (1) age is a risk factor for dementia; (2) early signs and symptoms of dementia in older people deserve attention; (3) putting pressure on family caregivers of people with dementia; (4) expectations to maintain social engagement and slow down the development of dementia. This study also found that the views of the reality-show participants highlight the capability of older people with dementia to communicate effectively and live with the condition, their personal goals of sustaining a happy, meaningful and sociable life, as well as their actions to positively influence personal circumstances. The results of this study indicate that this reality show might help reduce the stigma of dementia and empower older people living with dementia, while it also tends to stress the responsibility for care on family carers and shift the responsibility of managing the dementia-related challenges to older people living with dementia.

scholarly journals Is health literacy of family carers associated with carer burden, quality of life, and time spent on informal care for older persons living with dementia?

PLoS ONE ◽  
2020 ◽  
Vol 15 (11) ◽  
pp. e0241982
Author(s):  
Kristin Häikiö ◽  
Denise Cloutier ◽  
Jorun Rugkåsa
Keyword(s):  
Quality Of Life ◽  
Health Literacy ◽  
Older People ◽  
Informal Care ◽  
Linear Regression Analysis ◽  
Bivariate Analysis ◽  
Family Carers ◽  
Independent Variables ◽  
Carer Burden

Introduction Family carers are cornerstones in the care of older people living with dementia. Family carers report extensive carer burden, reduced health-related quality of life (HRQoL), and extensive time spent on informal care (Time). Health literacy (HL) is a concept associated with people’s ability to access health services, and navigate the healthcare system. This study’s aim was to investigate HL among family carers, and investigate the associations between HL and carer burden, HRQoL, and Time spent on informal care. Method We designed a self-administered survey comprising validated instruments, including the Health Literacy Scale (HLS-N-Q12) to measure HL, Relative Stress Scale (RSS) to measure carer burden, the EQ-5D-5L instrument to measure HRQoL, and some modified questions from the Resource Utilization in Dementia (RUD) questionnaire to measure time spent on informal care (Time). Descriptive analysis in addition to bivariate and multiple linear regressions were undertaken. In multiple linear regression analysis, we used HL as the independent variable to predict the outcomes (carer burden, HRQoL, Time). Analyses were adjusted for the effects of explanatory independent variables: age, gender, education levels, urban residency, having worked as health personnel, caring for someone with severe/mild dementia, and being born abroad. Findings In a non-probability sample of 188 family carers from across Norway, most of them female and over the age of 60, we found high levels of HL. In the bivariate analysis, carer burden and HRQoL (EQvalue) showed significant associations with HL. In the multiple regression analyses, HL was statistically significantly associated with carer burden (B = -0.18 CI:-0.33,-0.02 p = 0.02), HRQoL (EQvalue: B = 0.003 with 95% CI: 0.001, 0.006 p = 0.04), and Time (B = -0.03 with 95% CI: -0.06, 0.000, p = 0.046), after adjusting for the effect of independent variables. Conclusion This is one of the first studies to investigate the associations between HL and different outcomes for family carers of older people living with dementia. Additional research into the associations identified here is needed to further develop our understanding of how to support family carers in their roles. Targeted support that increases family carers’ HL may have potential to enhance their ability to provide sustainable care over time.

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 A LIFE MORE ORDINARY: CREATING DEMENTIA-FRIENDLY SPACES THROUGH THE PERFORMATIVE ARTS

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S535-S535
Author(s):  
Christine Milligan
Keyword(s):  
Older People ◽  
Sense Of Belonging ◽  
Qualitative Evaluation ◽  
Family Carers ◽  
Micro Scale ◽  
Everyday Activities ◽  
Meaningful Participation ◽  
The Arts ◽  
People With Dementia ◽  
The City

Abstract The concept of dementia friendly communities emerged from the ‘age-friendly’ movement that has been supported by the WHO for some time. This recognizes that like most older people, those with dementia desire to remain in their own homes, and their own communities, for as long as possible. But it also recognizes the significant socio-environmental challenges this can present. Transforming attitudes to dementia, supporting family and friend caregivers, and promoting meaningful participation for all in the community are essential to the success of any such movement. This paper draws on a qualitative evaluation of one such programme that has sought to develop innovative dementia friendly spaces through the arts and arts performance. Focusing on the Dukes Theatre in Lancaster, UK and its partner theatres and cinemas, I discuss how these venues have, over a three year period, developed spaces in which both people with dementia and their family carers can continue to meaningfully participate in ordinary everyday activities that can be crucial to maintaining the sense of belonging and partnership that is often lost as the dementia journey progresses. Whilst efforts to implement change at the city and community level are laudable, I suggest that it is perhaps at the micro-scale of individual places that we are most likely to successfully stimulate change.

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