“There isn't an easy way of finding the help that's available.” Barriers and facilitators of service use among dementia family caregivers: a qualitative study

ABSTRACTBackground:Family caregivers of people with dementia have significant unmet needs in regard to their caregiving role. Despite this, they are reluctant to utilize services to reduce their burden. The aim of this study was to examine the barriers and facilitators of service use among family caregivers of people with dementia.Method:Semi-structured interviews were conducted with 24 family caregivers of community-dwelling people with dementia. Of these, 12 were partner caregivers (4 men, 8 women) and 12 were offspring caregivers (2 men, 10 women). The interviews were transcribed and analyzed using thematic analysis.Results:Six main barriers and three facilitators were identified. These barriers and facilitators were relevant across many types of services and supports. The barriers were: the inability to find information about relevant services or support, the poor quality or mistrust of the services, the inflexibility of services, caregivers’ beliefs about their obligations to the caregiving role and resistance by the care recipient. Key facilitators were: having good communication with the care recipient, having an “expert” point of contact, and having beliefs about the caregiving role that enabled the use of services.Conclusion:Given the significant changes in the aged care service-system, it is important to discuss the barriers faced by family caregivers of people with dementia. This will inform the development of targeted strategies to address the lack of service use among these family caregivers.

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Technology-Driven Dyadic Interaction Support for Community-Dwelling People With Dementia and Family Caregivers

Innovation in Aging ◽

10.1093/geroni/igab046.2248 ◽

2021 ◽

Vol 5 (Supplement_1) ◽

pp. 589-589

Author(s):

Karin Wolf-Ostermann ◽

Lars Steinert ◽

Tanja Shultz ◽

Viktoria Hoel

Keyword(s):

Family Caregivers ◽

Cognitive Abilities ◽

Community Dwelling ◽

Dyadic Interaction ◽

Structured Interviews ◽

Joint Activities ◽

People With Dementia ◽

Intervention Community ◽

The Impact

Abstract People with dementia and their family caregivers struggling with the impacts of the condition on cognitive abilities, experience deterred social interactions and strained relationships. Technology can potentially sustain the relationship by engaging dyads in joint activities and supporting their interaction. This study aimed to evaluate the impact of a tablet-based activation system, I-CARE, specifically designed to engage people with dementia in meaningful activities. In this intervention, community-dwelling people with dementia and their family caregiver engaged in joint activities supported by the I-CARE system. Quantitative measures on quality of life, relationship quality and caregiver burden are collected, while semi-structured interviews explore the impact of Covid-19, as well as what motivates the participants to invite technology into their dyadic interactions. Our findings provide important insight in how technology can support social health and relationship sustenance of dyads living with dementia, and what implications Covid-19 has for their social participation in society.

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Cohort profile: Dementia in the Registry of Senior Australians

BMJ Open ◽

10.1136/bmjopen-2020-039907 ◽

2021 ◽

Vol 11 (2) ◽

pp. e039907

Author(s):

Monica Cations ◽

Catherine E Lang ◽

Stephanie A Ward ◽

Maria Crotty ◽

Craig Whitehead ◽

...

Keyword(s):

Service Use ◽

Care Service ◽

Aged Care ◽

Residential Aged Care ◽

Assessment Data ◽

Cross Sectional ◽

People With Dementia ◽

Psychotropic Medicine ◽

Care Assessment ◽

The Impact

PurposeClinical quality registries (CQRs) are being established in many countries to monitor, benchmark, and report on the quality of dementia care over time. Case ascertainment can be challenging given that diagnosis occurs in a variety of settings. The Registry of Senior Australians (ROSA) includes a large cohort of people with dementia from all Australian states and territories identified using routinely collected aged care assessment data. In ROSA, assessment data are linked to information about aged and health service use, medicine dispensing, hospitalisations and the National Death Index. The ROSA dementia cohort was established to capture people for the Australian dementia CQR currently in development who may not be identified elsewhere.ParticipantsThere were 373 695 people with dementia identified in aged care assessments from 2008 to 2016. Cross-sectional analysis from the time of cohort entry (e.g. when first identified with dementia on an aged care assessment) indicates that individuals were 84.1 years old on average, and 63.1% were female. More than 44% were first identified at entry to permanent residential aged care. The cohort recorded more severe cognitive impairment at entry than other international dementia registries.Findings to dateThe cohort has so far been used to demonstrate a declining prevalence of dementia in individuals entering the aged care sector, examine trends in psychotropic medicine prescribing, and to examine the impact of dementia on aged care service use and outcomes.Future plansThe ROSA dementia cohort will be updated periodically and is a powerful resource both on its own and as a contributor to the Australian dementia CQR. Integration of the ROSA dementia cohort with the dementia CQR will ensure that people with dementia using aged care services can benefit from the ongoing monitoring and benchmarking of care that a registry can provide.

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The challenge of pain identification, assessment, and management in people with dementia: a qualitative study

BJGP Open ◽

10.3399/bjgpopen20x101040 ◽

2020 ◽

Vol 4 (2) ◽

pp. bjgpopen20X101040

Author(s):

Laurna Bullock ◽

Carolyn A Chew-Graham ◽

John Bedson ◽

Bernadette Bartlam ◽

Paul Campbell

Keyword(s):

Pain Management ◽

Qualitative Study ◽

Family Caregivers ◽

Old Age ◽

Community Services ◽

Community Dwelling ◽

Assessment Tools ◽

Structured Interviews ◽

People With Dementia ◽

Management Plans

BackgroundPainful conditions are common in older adults, including people with dementia. The symptoms associated with dementia (for example, diminished language capacity, memory impairment, and behavioural changes), however, may lead to the suboptimal identification, assessment, and management of pain. Research has yet to qualitatively explore pain management for community-dwelling people with dementia.AimTo explore pain identification, assessment, and management for community-dwelling people with dementia.Design & settingA qualitative study was undertaken, set in England.MethodSemi-structured interviews took place with people with dementia, family caregivers, GPs, and old-age psychiatrists. Data were analysed thematically.ResultsInterviews were conducted with eight people with dementia, nine family caregivers, nine GPs, and five old-age psychiatrists. Three themes were identified that related to pain identification and assessment: gathering information to identify pain; the importance of knowing the person; and the use of pain assessment tools. A further three themes were identified that related to pain management: non-drug strategies; concerns related to analgesic medications; and responsibility of the caregiver to manage pain.ConclusionIdentifying and assessing the pain experienced by people with dementia was challenging. Most people with dementia, family caregivers, and healthcare professionals supported non-drug strategies to manage pain. The minimal concerns associated with non-drug strategies contrasted the multifactorial concerns associated with analgesic treatment for people with dementia. Given the complexity of pain identification, assessment, and management, primary care should work together with family caregivers and community services, with case finding for pain being considered in all assessment and management plans.

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Perceptions of Family Caregivers of People With Dementia Regarding Symptom Management and the COVID-19 Pandemic

Innovation in Aging ◽

10.1093/geroni/igab046.587 ◽

2021 ◽

Vol 5 (Supplement_1) ◽

pp. 154-155

Author(s):

Melissa Harris ◽

Marita Titler

Keyword(s):

Older Adults ◽

Family Caregivers ◽

Community Services ◽

Community Dwelling ◽

Care Recipient ◽

Future Research ◽

Service Access ◽

Psychological Responses ◽

People With Dementia ◽

The Impact

Abstract Nearly 98% of older adults with Alzheimer’s disease and related dementias (ADRD) experience behavioral and psychological symptoms of dementia (BPSD). Although BPSD are linked to caregiver burden, perceptions of family caregivers on the impact of BPSD and their experiences addressing them in the home are unclear, and little is known about the impact of the pandemic on these experiences. Study aims were to explore: 1) the experiences of family caregivers of community dwelling older adults with ADRD regarding BPSD and how they manage BPSD in the home, and 2) how the pandemic impacted family caregivers’ experiences, BPSD of their relatives, and BPSD management. A qualitative, exploratory approach was used; 21 family caregivers were interviewed virtually. Content analysis and constant comparative methods were used. Ten major themes emerged: 1) Emotional and psychological responses of caregiver, 2) Loss, 3) Anticipation, 4) Reliance, 5) Learning to caregive, 6) Rewarding, 7) Emotional and psychological responses of care recipient 8) Cognition of care recipient, 9) Care strategies, 10) Caregiver perspectives. Caregivers did not use terms “behaviors” or “symptoms”, instead they described their relatives’ and their own experiences interdependently. Caregiving challenges presented before the pandemic (e.g. equivocal effects of medications, increasing care demands), many of which were compounded by the pandemic. Future research should explore the experiences of caregivers from a range of backgrounds. Findings illustrate communication barriers exist between clinicians, community services, people with ADRD and their families which may be addressed through clinician education, family-centered care planning, and policies to expand support service access.

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The impact of dementia on aged care service transitions in the last five years of life

Age and Ageing ◽

10.1093/ageing/afaa254 ◽

2020 ◽

Author(s):

Heidi J Welberry ◽

Louisa R Jorm ◽

Sebastiano Barbieri ◽

Benjumin Hsu ◽

Henry Brodaty

Keyword(s):

Home Care ◽

End Of Life ◽

Residential Care ◽

Service Use ◽

Care Service ◽

Care Home ◽

Aged Care ◽

Dementia Diagnosis ◽

People With Dementia ◽

The Impact

Abstract Objective To investigate the impact of dementia on aged care service use at end-of-life. Methods Our retrospective data linkage study in New South Wales, Australia, used survey data from participants in the 45 and Up Study who died between July 2011–June 2014 linked to routinely collected administrative data for 2006–2014. We investigated movement between aged care “states” (No Services, Home Care including Home Support and Low-and High-Level Home Care and Residential Care) in the last five years of life. The dementia cohort comprised decedents with a dementia diagnosis recorded in hospital records, death certificates or who had claims for dementia-specific medicines prior to death (n = 2,230). The comparison cohort were decedents with no dementia diagnosis, matched 1:1 on age-at-death, sex, income and location. Results Compared to those without dementia, people with dementia were more likely to: use home care (67 versus 60%, P < 0.001), enter residential care (72 versus 30%, P < 0.001) and stay longer in residential care (median 17.9 versus 12.7 months, P < 0.001). Five years before death, more people with dementia were within residential care (6 versus 4%; RR = 1.61, 95%CI = 1.23–2.10) and these rates diverged at the end-of-life (69 versus 28%, RR = 2.48, 95%CI = 2.30–2.66). Use of home-based care was higher among people with dementia five years from death (20 versus 17%; RR = 1.15, 95%CI = 1.02–1.30) but lower at end-of-life (13 versus 24%, RR = 0.55, 95%CI = 0.49–0.63). Conclusion Dementia-specific aged care trajectories were dominated by residential care. Home care use declined towards end-of-life for people with dementia and may not be meeting their needs.

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Mentalizing Imagery Therapy mobile application for family dementia caregivers: feasibility and effects on mood and caregiving

10.31231/osf.io/cgpfs ◽

2018 ◽

Author(s):

Abu Sikder ◽

Francis Yang ◽

Rhiana Schafer ◽

Glenna A. Dowling ◽

Lara Traeger ◽

...

Keyword(s):

Family Caregivers ◽

Mobile Application ◽

Self Regulation ◽

Pilot Trial ◽

Depression Symptom ◽

Structured Interviews ◽

Physical Strain ◽

Dementia Caregivers ◽

Loved One ◽

People With Dementia

Objectives: Due to psychological and physical strain, family caregivers of patients with Alzheimer’s disease and related dementias are at high risk for depression and stress related disorders. We investigated the feasibility of a mobile application (App) intervention delivering Mentalizing Imagery Therapy (MIT), which incorporates guided imagery and mindfulness, to facilitate self-regulation and increase perspective on the mental life of self and others. Method: A 4-week pilot trial of an MIT App for family caregivers of people with dementia was conducted to assess feasibility of use, mood and depression symptom benefit, and relationship changes. Semi-structured interviews were conducted at the study’s conclusion to characterize participants’ perceived benefits. Results: 80% of 21 consented participants downloaded the App, utilized it at least once, and were further analyzed. Of these participants, average usage of audio recordings was 14 ± 10 (SD) days out of 28 possible, and 29 ± 28 individual sessions. Acute improvement in mood from before to after completion of exercises was uniformly observed (p < .001), and after four weeks there was a significant increase in positive affect and a reduction in negative affect. Participants with severe levels of depression (n=3) at baseline exhibited an improvement in symptoms at 4 weeks averaging 30% (p < .05). Semi-structured interviews revealed an increase in the ability to remain “centered" despite caregiving challenges, take the perspective of the loved one, and positively reframe the caregiver experience.Conclusion: App delivery of MIT is feasible for family dementia caregivers. Results showed moderate to high usage of the app for a majority of the users, and promising improvements in mood and depression. These data provide justification for larger, controlled trials.

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Housing and Care for Older Women in Australia

Frontiers in Public Health ◽

10.3389/fpubh.2021.566960 ◽

2021 ◽

Vol 9 ◽

Author(s):

Julie E. Byles ◽

Emily M. Princehorn ◽

Peta M. Forder ◽

Md Mijanur Rahman

Keyword(s):

Service Use ◽

Care Service ◽

Later Life ◽

Aged Care ◽

Community Services ◽

Residential Aged Care ◽

Institutional Setting ◽

Care Needs ◽

Housing Type ◽

Care Assessment

Background: Housing is essential for healthy ageing, being a source of shelter, purpose, and identity. As people age, and with diminishing physical and mental capacity, they become increasingly dependent on external supports from others and from their environment. In this paper we look at changes in housing across later life, with a focus on the relationship between housing and women's care needs.Methods: Data from 12,432 women in the 1921–26 cohort of the Australian Longitudinal Study on Women's Health were used to examine the interaction between housing and aged care service use across later life.Results: We found that there were no differences in access to home and community care according to housing type, but women living in an apartment and those in a retirement village/hostel were more likely to have an aged care assessment and had a faster rate of admission to institutional residential aged care than women living in a house. The odds of having an aged care assessment were also higher if women were older at baseline, required help with daily activities, reported a fall, were admitted to hospital in the last 12 months, had been diagnosed or treated for a stroke in the last 3 years, or had multiple comorbidities. On average, women received few services in the 24 months prior to admission to institutional residential aged care, indicating a potential need to improve the reach of these services.Discussion: We find that coincident with changes in functional capacities and abilities, women make changes to their housing, sometimes moving from a house to an apartment, or to a village. For some, increasing needs in later life are associated with the need to move from the community into institutional residential aged care. However, before moving into care, many women will use community services and these may in turn delay the need to leave their homes and move to an institutional setting. We identify a need to increase the use of community services to delay the admission to institutional residential aged care.

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Limited engagement in, yet clear preferences for advance care planning in young-onset dementia: An exploratory interview-study with family caregivers

Palliative Medicine ◽

10.1177/0269216319864777 ◽

2019 ◽

Vol 33 (9) ◽

pp. 1166-1175 ◽

Cited By ~ 2

Author(s):

Romy Van Rickstal ◽

Aline De Vleminck ◽

Melissa D Aldridge ◽

Sean R Morrison ◽

Raymond T Koopmans ◽

...

Keyword(s):

Family Caregivers ◽

Advance Care Planning ◽

Quality Care ◽

Third Party ◽

Care Planning ◽

Structured Interviews ◽

Young Onset ◽

People With Dementia ◽

Advance Care ◽

Young Onset Dementia

Background: The significance of advance care planning in dementia is widely acknowledged. Despite the suggestion that younger people with dementia and their family might have distinct needs and preferences in this area, studies on advance care planning in young-onset dementia are absent. Aim: We aim to explore (1) whether family caregivers had already engaged in advance care planning with patients and/ or professionals and the accompanying reasons and (2) family caregivers’ preferences for how to ideally engage in the process with patients, family and professionals. Design: A qualitative study was conducted: we analysed semi-structured interviews ( n = 15) through the method of constant comparative analysis. Setting/participants: We included Flemish family caregivers of persons with young-onset dementia. Results: Plans for the future typically concerned non-medical affairs. Participants’ limited engagement in advance care planning was clarified through several reasons: not considering it useful, hindering patient behaviour, adopting a day-to-day attitude, caregivers emotionally protecting themselves and uncertainty about patients’ cognitive competence. However, endorsement for advance care planning showed from respondents’ preferences that it should be initiated timely, by a third party, and emphasize patients’ remaining capacities. Finally, the need for information and high-quality care emerged. Conclusion: A gap of knowledge, of information and in care intertwiningly hinder advance care planning. In young-onset dementia, engaging in advance care planning is not an option equally accessible as not doing so. Policy makers, institutions and professionals could reflect on their responsibility in providing these patients and caregivers an actual choice to engage in advance care planning or not.

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Carers’ experiences of timely access to and use of dementia care services in eight European countries

Ageing and Society ◽

10.1017/s0144686x19001119 ◽

2019 ◽

pp. 1-18 ◽

Cited By ~ 1

Author(s):

Hannah Jelley ◽

Liselot Kerpershoek ◽

Frans Verhey ◽

Claire Wolfs ◽

Marjolein de Vugt ◽

...

Keyword(s):

Service Use ◽

Study Participant ◽

Formal Care ◽

Structured Interviews ◽

Care Services ◽

People With Dementia ◽

Timely Access ◽

Mixed Feelings ◽

Barriers To Service ◽

Person With Dementia

AbstractTimely access to care services is crucial to support people with dementia and their family carers to live well. Carers of people with dementia (N = 390), recruited from eight countries, completed semi-structured interviews about their experiences of either accessing or not using formal care services over a 12-month period in the Access to Timely Formal Care (Actifcare) study. Participant responses were summarised using content analysis, categorised into clusters and frequencies were calculated. Less than half of the participants (42.3%) reported service use. Of those using services, 72.8 per cent reported timely access and of those not using services 67.2 per cent were satisfied with this situation. However, substantial minorities either reported access at the wrong time (27.2%), or feeling dissatisfied or mixed feelings about not accessing services (32.8%). Reasons for not using services included use not necessary yet, the carer provided support or refusal. Reasons given for using services included changes in the condition of the person with dementia, the service's ability to meet individual needs, not coping or the opportunity to access services arose. Facilitators and barriers to service use included whether participants experienced supportive professionals, the speed of the process, whether the general practitioner was helpful, participant's own proactive attitude and the quality of information received. To achieve timely support, simplified pathways to use of formal care services are needed.

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