The development and feasibility evaluation of a program to identify and manage apathy in people with dementia: the SABA program

Nijsten, Hanneke; Plouvier, Annette O A; Smalbrugge, Martin; Koopmans, Raymond T.C.M.; Leontjevas, Ruslan; Gerritsen, Debby L.

doi:10.1080/13607863.2023.2228252

Cited by 3 publications

(10 citation statements)

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“… 42 44 52–54 59 Items brought in by family caregivers (ie, pictures and memorabilia) were then often used to develop activities for the residents or in creating a draft life story book. 45 50 52 53 55 56 Regarding their involvement, family caregivers expressed a need for more communication and exchange of ideas about the care of their relatives with staff, 52 54 57 58 as well as a need for guidance and education about dementia and its effect on their relative. 42 54 …”

Section: Resultsmentioning

confidence: 99%

“…These included clearly defined practical activities and activities they enjoyed doing themselves, that matched their own interests and that they felt comfortable with. 52 57 Examples of practical activities family caregivers preferred were cooking, watering plants, sending a postcard together, painting, going for a walk or playing a game. Family caregivers also specifically mentioned attending church or attending community gatherings, such as playing Bingo, 42 reading the newspaper together, having dinner outside the facility, reminiscing or listening to music as enjoyable activities.…”

Section: Resultsmentioning

confidence: 99%

“…Inadequate collaboration between family caregiver and professional caregiver because of staff not considering individual preferences of family caregivers 52 …”

Section: Resultsmentioning

confidence: 99%

“…Misconceptions and unclear communication about how family caregivers can participate in an intervention 52 57 …”

Section: Resultsmentioning

confidence: 99%

“…Correct form, quality and content of the intervention materials. Availability of clear instruction materials for the intervention and activities 52 …”

Section: Resultsmentioning

confidence: 99%

See 4 more Smart Citations

What are best practices for involving family caregivers in interventions aimed at responsive behaviour stemming from unmet needs of people with dementia in nursing homes: a scoping review

Tasseron-Dries,

Smaling,

Nakanishi

et al. 2023

BMJ Open

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ObjectivesThis study aimed to determine best practices for involving family caregivers in interventions aimed at preventing and reducing responsive behaviour stemming from unmet needs, including pain.DesignScoping review, reported according to the Preferred Reporting Items for Systematic Reviews, Meta-Analyses extension for Scoping Reviews reporting guideline.Data sourcesPubMed, Embase, Emcare, Web of Science, COCHRANE Library, PsycINFO, Academic Search Premier and Cinahl searched up to 23 July 2023.Eligibility criteriaStudies reporting on family involvement in interventions for nursing home residents with dementia were included.Data extraction and synthesisTwo researchers independently extracted the data, followed by a content analysis.ResultsOf the 1486 records screened, 20 studies were included. Family caregivers were involved in interventions aimed at planning care, life review (eg, documentation of life experiences of their relative), and selecting activities for their relative. Family caregivers preferred an active role in developing optimal care for their relative. Drivers of success and barriers to family involvement centred around three themes: (1) communication between all involved; (2) prerequisites (organisational and other conditions) and (3) personal circumstances (family’s coping and skills).ConclusionBest practices for involving family caregivers in interventions aimed at addressing responsive behaviour in residents with dementia concerned those interventions in which family caregivers were given an important role in managing responsive behaviour. This means that, in order to achieve an active role of family caregivers in the whole care process, their needs must be taken into account.Trial registration numberThe protocol of the review was regisered at OSF;https://osf.io/twcfq

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

“…Inadequate collaboration between family caregiver and professional caregiver because of staff not considering individual preferences of family caregivers 52 …”

Section: Resultsmentioning

confidence: 99%

“…Misconceptions and unclear communication about how family caregivers can participate in an intervention 52 57 …”

Section: Resultsmentioning

confidence: 99%

“…Correct form, quality and content of the intervention materials. Availability of clear instruction materials for the intervention and activities 52 …”

Section: Resultsmentioning

confidence: 99%

See 3 more Smart Citations

What are best practices for involving family caregivers in interventions aimed at responsive behaviour stemming from unmet needs of people with dementia in nursing homes: a scoping review

Tasseron-Dries,

Smaling,

Nakanishi

et al. 2023

BMJ Open

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Identifying and managing apathy in people with dementia living in nursing homes: a qualitative study

Nijsten,

Smalbrugge,

Plouvier

et al. 2023

BMC Geriatr

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Background Although apathy is common in people with dementia and has profound negative effects, it is rarely diagnosed nor specifically treated in nursing homes. The aim of this study is to explore experiences in identifying and managing apathy from the perspectives of people with dementia and apathy (PwA), family caregivers (FCs) and professional caregivers (PCs). Methods Descriptive qualitative study with purposive sampling, comprising eleven semi-structured in-depth interviews with PwA, FCs or PCs and focus groups with twelve PCs in Dutch nursing homes. Seventeen additional in-depth interviews with caregivers were held, after signals of increasing apathy during the first Covid-19 lockdown. Using an inductive approach, data was analysed thematically to explore the experiences in identifying and managing apathy from the perspective of different stakeholders. Results Three themes were identified: 1) the challenge to appraise signals, 2) the perceived impact on well-being, 3) applied strategies to manage apathy. Although participants described apathy in line with diagnostic criteria, they were unfamiliar with the term apathy and had difficulties in appraising signals of apathy. Also, the perceived impact of apathy varied per stakeholder. PwA had difficulties reflecting on their internal state. FCs and PCs experienced apathy as challenging when it reduced the well-being of PwA or when they themselves experienced ambiguity, frustration, insecurity, disappointment or turning away. Dealing with apathy required applying specific strategies that included stimulating meaningful contact, adjusting one’s expectations, and appreciating little successes. Conclusions When addressing apathy in nursing homes, it is important to consider that a) all stakeholders experience that appraising signals of apathy is challenging; b) apathy negatively influences the well-being of people with dementia and especially their FCs and PCs; and c) FCs and PCs can successfully, albeit temporarily, manage apathy by using specific strategies.

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Towards a Non-pharmacological Intervention on Apathy in Korsakoff’s Syndrome: A Systematic Narrative Review Across Different Clinical Conditions

van Dorst,

Rensen,

Nijsten

et al. 2024

NDT

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Apathy is a quantitative reduction of goal-directed activity, which can be observed in relation to behavior, cognition, emotions and social interaction. It is an invalidating behavioral symptom that is frequently present across different psychiatric conditions and neurocognitive disorders including Korsakoff’s Syndrome (KS). In fact, apathy is one of the most severe behavioral symptoms of KS and has a major impact on the lives of patients and their relatives and other informal caregivers. However, guidelines for the treatment of apathy in KS are currently not available. This systematic narrative review provides a transdiagnostic overview of the effectiveness of different types of non-pharmacological interventions on apathy across different study populations that at symptom-level share characteristics with KS. This evidence may inform the development of an intervention targeting apathy in KS. The included study populations are dementia (due to Alzheimer’s disease, or vascular dementia), Parkinson’s disease, schizophrenia and traumatic brain injury. Through a stepped selection approach and with regard to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines, 22 systematic reviews and 32 empirical articles on the non-pharmacological treatment of apathy were identified. The results show a variety of effective non-pharmacological interventions on apathy. In conditions with severe cognitive impairments, successful interventions did not rely on intrinsic motivation, self-monitoring, or illness insight of the patients, but depend on external stimulation and behavioral activation. Since apathy is a multidimensional construct, identification of the extent and type of apathetic behavior before starting an intervention is highly recommended. Furthermore, it is important to adjust the treatment to the patients’ personal interests and needs and embedded in daily care. Trial registration CRD42022298464 (PROSPERO).

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The development and feasibility evaluation of a program to identify and manage apathy in people with dementia: the SABA program

Cited by 3 publications

References 40 publications

What are best practices for involving family caregivers in interventions aimed at responsive behaviour stemming from unmet needs of people with dementia in nursing homes: a scoping review

What are best practices for involving family caregivers in interventions aimed at responsive behaviour stemming from unmet needs of people with dementia in nursing homes: a scoping review

Identifying and managing apathy in people with dementia living in nursing homes: a qualitative study

Towards a Non-pharmacological Intervention on Apathy in Korsakoff’s Syndrome: A Systematic Narrative Review Across Different Clinical Conditions

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