'I know his needs better than my own' – carers’ support needs when caring for a person with dementia

Clemmensen, Trine Holt; Lauridsen, Henrik Hein; Andersen‐Ranberg, Karen; Kristensen, Hanne Kaae

doi:10.1111/scs.12875

Cited by 20 publications

(19 citation statements)

References 62 publications

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“…CFA of Model 1 and Model 2 demonstrated almost the same fit indices of a moderate fitting model. Post hoc analysis of Model 2 including possible local dependency showed a marginally improved fit and we believe this model to be the best fit when describing the factor structure of DeCANT, because it is based on a strong theoretical framework (Schreiber et al, 2006) taking into account the dynamic interaction of carers' support needs in the context of caring (Clemmensen et al, 2020). Although fit indices from post hoc analysis of Model 2 imply an acceptable fit of observed data, further testing of the factor structure should be performed in more and larger samples (Boateng et al, 2018;Hu and Bentler, 1999).…”

Section: Discussionmentioning

confidence: 91%

“…The interviews comprised interviews with carers (n = 23) and professionals (n = 13) in primary and secondary care. For details of the interviews, see Clemmensen et al (2020). The scoping review followed the methodology described by Levac et al (2010).…”

Section: Item Generationmentioning

confidence: 99%

“…MODEL 1 Initial grouping of items was guided by a conceptual framework of four main categories derived from an inductive analysis of carers' and professionals' views on carers' support needs (Clemmensen et al, 2020). Carers' support needs were categorized into: (1) communicating and interacting with surroundings (i33, i37, i38, i41, and i42), (2) daily life when caring for a person with dementia (i1, i3, i4, i6, and i9), (3) maintaining own well-being (i22, i23, i24, i26, i27, i28, i30, i31, and i32), and (4) focusing on themselves (i12, i13, i16, i18, i19, and i21).…”

Section: Confirmatory Factor Analysismentioning

confidence: 99%

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Development and field-testing of the Dementia Carer Assessment of Support Needs Tool (DeCANT)

Clemmensen

Kristensen

Andersen‐Ranberg

et al. 2020

Int. Psychogeriatr.

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Objectives: Caring for a person with dementia is associated with poor mental, physical, and social health, which makes it important to consider how carers are best supported in their caring role to preserve both their and the person with dementia’s well-being. At present, a robust instrument to assess carers’ support needs does not exist. This study aimed to develop a self-reported questionnaire to assess the support needs of carers of people with dementia. The objectives were to: (1) generate items, (2) pilot test, and (3) field-test the questionnaire. Design: Development and field-testing of a new questionnaire. Settings: Primary and secondary health and social care of informal carers and people with dementia in nine municipalities and one dementia clinic in a hospital in Denmark. Participants: Eight experts, 12 carers, and 7 digital users participated in pilot testing. 301 carers participated in field-testing. Measurements: Items for inclusion were generated based on interviews and literature review. An iterative process of data collection was applied to establish face and content validity of the Dementia Carer Assessment of Support Needs Tool (DeCANT) using Content Validity Index among experts and cognitive interviews with carers. Field-testing of DeCANT among carers included using the 12-item Short Form Health Survey, the Barthel-20 Index, and the Neuropsychiatric Inventory. Results: Initially, an item pool of 63 items was generated, and pilot testing reduced this to 42 items. Subsequent field-testing resulted in a 25-item version of DeCANT, and confirmatory factor analysis of three hypothesized models demonstrated a marginally better fit to a four-factor model with fit indices of: χ2 = 775.170 (p < 0.001), root mean square error of approximation = 0.073, Comparative Fit Index = 0.946, the Tucker-Lewis Index = 0.938, and weighted root mean residual (WRMR) = 1.265. Conclusions: DeCANT is a 25-item carer-reported questionnaire that can be used to help identify their support needs when caring for a person with dementia to enable supportive interventions and improve carers’ health and well-being.

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Section: Discussionmentioning

confidence: 91%

Section: Item Generationmentioning

confidence: 99%

Section: Confirmatory Factor Analysismentioning

confidence: 99%

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Development and field-testing of the Dementia Carer Assessment of Support Needs Tool (DeCANT)

Clemmensen

Kristensen

Andersen‐Ranberg

et al. 2020

Int. Psychogeriatr.

Self Cite

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“…44,45 Finally, caregivers' support is crucial in dementia treatment; thus, the instruments to facilitate dialogue between caregivers and professionals with the aim of assessing their needs should be developed. 46 Finally, the path to effective treatments of dementia is through increased research funding and increased participation in clinical studies.…”

Section: Quality Of Life: the Ability To Perform Activities Of Daily Livingmentioning

confidence: 99%

<p>Activities of Daily Living and Associated Costs in the Most Widespread Neurodegenerative Diseases: A Systematic Review</p>

Marešová¹,

Hruška²,

Klímová³

et al. 2020

CIA

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Nowadays, the population is rapidly ageing because of increasing life expectancy and decreasing birth rates. Thus, the purpose of this systematic review is to prepare a comprehensive overview which identifies the activities of daily living (ADLs) that are gradually reduced among patients with dementia, as well as explore the therapies applied in relation to dementia and how they effectively improve the quality of life (QoL) of patients and caregivers. Furthermore, we aim to summarise the ADL activities influenced by therapies and examine the treatment costs and care for patients so that recommendations for research and development (R&D) can be made to improve both the QoL of people with dementia and cost-saving measures. The research focuses on four selected neurodegenerative diseases: Alzheimer, Parkinson, vascular dementia, and amyotrophic lateral sclerosis. Therefore, the peer-reviewed English written articles from 2014 to 2019 were searched between September 1 and December 13, 2019. Twenty-seven papers were included in the analysis. The results show that essential assistance occurs in connection with activities: eating, drinking, dressing, bathing, personal hygiene, use of the toilet, and transport. By contrast, shopping or cleaning is not addressed as much. A lower ability to take care of oneself is connected with poor patient health and higher social care costs because the patient requires care from external sources, such as home aid or nurse visits. The challenge that remains is to shift new knowledge from scientific disciplines and connect it with the needs of patients to remove legitimate barriers and increase the acceptance of new solutions by popularisation. Additionally, regarding the burden on caregivers, it would be appropriate to promote this area of education and employment so that family members can use formal caregivers, ensuring them free time and much-needed rest.

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“…Of the estimated 55 million people living with dementia worldwide (WHO, 2021), many receive support from family members or friends, who are providing free and unpaid care to their relatives with dementia. Whilst providing a great deal of support for their relatives, unpaid carers are often overlooked in receiving support themselves (Clemmensen et al, 2021). Already before the COVID-19 pandemic, many unpaid carers experienced high levels of burden and poor mental well-being as a result (Sutcliffe et al, 2017).…”

Section: Introductionmentioning

confidence: 99%

The early impacts of COVID-19 on unpaid carers of people living with dementia: Part II of a mixed-methods systematic review

Giebel

Talbot

Wharton³

et al. 2022

Preprint

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Background With a lack of existing comprehensive reviews, the aim of this mixed-methods systematic review was to synthesise the evidence on the early impacts of the pandemic on unpaid dementia carers across the globe. Methods This review was registered on PROSPERO [CDR42021248050]. PubMed, CINAHL, Embase, Scopus and Web of Science were searched from 2020 to July 2021. Studies were included if they reported on the different impacts of the pandemic on unpaid dementia carers aged 18+, with papers published in English, German, Polish, or Spanish. A number of research team members were involved in the selection of studies following PRISMA guidance. Results Thirty-six studies (43 papers) from 18 countries reported on the early impact of the pandemic on unpaid dementia carers. Impacts were noted on accessing care and support; carer burden; and well-being. Studies found that carers had limited access to care and support services, increased workload, enhanced feelings of isolation, and reduced wellbeing. All these negatives impacts were interlinked, with reductions in access to care and support increased carer’s unpaid caring tasks, removing any opportunities for temporary respite, and thus increasing carer burden and reducing mental well-being in many. Conclusions The needs of unpaid dementia carers appear to have increased during the pandemic, without adequate support provided. Policy initiatives need to enable better mental health support and formal care provision for unpaid carers and their relatives with dementia, whilst future research needs to explore the long-term implications of carer needs in light of care home restrictions and care delivery.

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'I know his needs better than my own' – carers’ support needs when caring for a person with dementia

Cited by 20 publications

References 62 publications

Development and field-testing of the Dementia Carer Assessment of Support Needs Tool (DeCANT)

Development and field-testing of the Dementia Carer Assessment of Support Needs Tool (DeCANT)

<p>Activities of Daily Living and Associated Costs in the Most Widespread Neurodegenerative Diseases: A Systematic Review</p>

The early impacts of COVID-19 on unpaid carers of people living with dementia: Part II of a mixed-methods systematic review

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