Communication in dementia care: Experiences and needs of carers

Nguyen, Hoang; Eccleston, Claire; Doherty, Kathleen; Jang, Sunny; McInerney, Fran

doi:10.1177/14713012221080003

Cited by 9 publications

(3 citation statements)

References 42 publications

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“…1 Recently, the National Plan to Address Alzheimer’s Disease notes the need to support caregivers 41 and communication skills for interacting with the healthcare team have been identified as a top training need among caregivers. 42 The World Health Organization 43 (WHO) calls for the use of technology to support skills training and the opportunity to develop self-advocacy skills to better access health care services. The findings of this study support the recommendations of the National Plan and the WHO to use technology to educate dementia caregivers to confidently communicate with the healthcare team.…”

Section: Discussionmentioning

confidence: 99%

Improving Dementia Caregiver Activation With a Brief Communication Module

Wittenberg,

Sullivan,

Rios

2023

Am J Hosp Palliat Care

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Objective: Palliative care often plays a pivotal role in supporting informal caregivers of persons living with dementia who experience a lack of continuity in care. Dementia caregiver activation, the caregiver’s willingness and ability to navigate care needs, requires communication skills for developing relationships with healthcare providers. Communication activation is important because caregivers facilitate physician and patient information exchange. This study aimed to explore changes in communication outcomes (attitude, knowledge, and skills) and impact on caregiver communication activation (confidence, self-report) following completion of a brief communication module. Methods: A 15-minute asynchronous online module was developed to provide caregivers with communication skills for working with doctors and nurses. Caregivers completed pre/post module measures of communication outcomes, a vignette for applying communication strategies and were interviewed within a week of module completion to assess self-reported communication activation. Module acceptability was also evaluated. Results: Communication knowledge ( P < .01) significantly increased and nearly all participants (99%) demonstrated use of module-specific communication skills after completing the module. While not statistically significant, caregiver attitudes were in the expected direction. Caregiver self-reported communication confidence ( P < .001) significantly increased and 84% of caregivers described communication activation at post-module. Caregivers (83%) were likely to recommend the module. Conclusions: The brief communication module for dementia caregivers in this project offers an online resource with low time-burden that results in caregiver communication activation. Future testing in the clinical setting will increase understanding of its efficacy and integration and could be a viable resource for palliative care providers.

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Section: Discussionmentioning

confidence: 99%

Improving Dementia Caregiver Activation With a Brief Communication Module

Wittenberg,

Sullivan,

Rios

2023

Am J Hosp Palliat Care

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“…“Rejection of care” cluster (Cluster D) covers care problems such as “Refusing to take a bath,” “Refusing to wear clothes,” “Refusing to eat or refusing to be fed” and other manifestations of refusal to care. In the practice of caring for people living with dementia, we often find that if the caregiver forces the people living with dementia to do something he does not want to do, such as taking a shower, it is likely to induce verbal aggression or physical aggression ( 49 , 50 ). This practical experience also indirectly corresponds to the strong correlation between “Rejection of care” cluster (Cluster D) and “Verbal and physical aggression” cluster (Cluster C).…”

Section: Discussionmentioning

confidence: 99%

Identifying care problem clusters and core care problems of older adults with dementia for caregivers: a network analysis

Leng,

Han,

Sun

et al. 2023

Front. Public Health

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BackgroundA shift in research interest from separate care problem to care problem clusters among caregivers of people living with dementia may contribute to a better understanding of dementia care. However, the care problems network among caregivers of people living with dementia are still unknown. This study aimed to identify care problem clusters and core care problems, and explore demographic variables associated with these care problem clusters among caregivers of people living with dementia.MethodsParticipants were recruited through memory clinics and WeChat groups. The principal component analysis was applied to identify care problem clusters. The network analysis was conducted to describe the relationships among care problems and clusters. Multiple linear models were used to explore the associated factors for the occurrence of the overall care problems and top three central care problem clusters.ResultsA total of 1,012 carer-patient pairs were included in the analysis. Nine care problem clusters were identified. In the entire care problem network, “deterioration in activities of daily living” was the most core care problem cluster across the three centrality indices, followed by “verbal and nonverbal aggression” and “loss of activities of daily living.” Variables including marital status, years of dementia diagnosis, number of dementia medication type, and caregiver’s educational attainment were associated with the prevalence of these three care problem clusters.ConclusionOur study suggests that there is a need to evaluate care problem clusters for the improvement of care problem management among people living with dementia. It is particularly important to include assessment and treatment of core care problem as an essential component of the dementia care.

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Care for people living with dementia is receiving heightened scholarly and public attention (Nguyen et al, 2022;Zhao et al, 2022) with the advent of global aging. Dementia researchers believe that in the aging society, clinical treatment alone can't bring people living with dementia wellbeing and quality life (Swaffer, 2018).

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mentioning

confidence: 99%