What is known about the subjective needs of people with behavioural variant frontotemporal dementia? A scoping review

Dinand, Claudia; Nover, Sabine Ursula; Holle, Daniela; Zischka, Matthias; Halek, Margareta

doi:10.1111/hsc.12225

Cited by 5 publications

(4 citation statements)

References 38 publications

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“…Contrary to usual MM counselling, which is carried out mainly with the primary carer, and because all participating people with bvFTD had legal representatives, some of the people with bvFTD participated in watching the videos and getting feedback, even if their language abilities were very limited. This is especially remarkable because the perspectives of people with bvFTD are underrepresented and not well understood [58].…”

Section: Discussionmentioning

confidence: 99%

Application of Marte Meo® counselling with people with behavioural variant frontotemporal dementia and their primary carers (AMEO-FTD) – a non-randomized mixed-method feasibility study

Berwig

Dinand

Becker³

et al. 2020

Pilot Feasibility Stud

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Background: One of the core symptoms of behavioural variant frontotemporal dementia (bvFTD) is the early loss of social cognitive abilities, which has a deteriorating impact on everyday interaction and the quality of dyadic relationships. Marte Meo® (MM) counselling is a video-based intervention that aims to maintain or improve the quality of dyadic relationships. This non-randomized mixed-method study aimed to evaluate the feasibility of the intervention in practice with primary carers of persons with bvFTD as well as the feasibility of a future confirmatory trial. Methods: A pilot effect study with a quasi-experimental, one-group, pre-post design and double pre-measurement was conducted. Data were collected at three time points (t0, t1 after 2 weeks, and t2 after 6 weeks) using videography and several measurement instruments. Between t1 and t2, each primary carer received five MM counselling sessions. The outcomes included positive and negative affect, behavioural and psychological symptoms in dementia (BPSD), the interpersonal abilities of the person with dementia, the sensitivity and distress of the primary carers due to BPSD, the manageability of BPSD, the personal goal attainment by means of MM counselling, and the quality of the dyadic relationships. The pilot process evaluation focused on the primary carers' and the interventionist's perceived benefits and perceptions of the intervention process using questionnaires and interviews. Results: Five dyads were enrolled. Regarding the feasibility of the intervention, MM counselling seems to be appropriate and useful for the target group. Although the recruitment of persons with reliable bvFTD diagnoses was very time consuming and complex, the intervention was well accepted by the dyads, and regarding goal attainment, all carers benefited as much or even more than they expected. The study also showed that the benefits of MM counselling depend on whether the primary carer has accepted his/her relative's dementia. Regarding the feasibility of a future confirmatory trial, certain outcomes, particularly positive affect, distress due to BPSD, and the quality of the dyadic relationship, seem to be appropriate for describing possible effects. Conclusion: Overall, the intervention seems feasible for this target group. A future confirmatory trial should be planned as a multicentre pilot trial with an extension option.

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Section: Discussionmentioning

confidence: 99%

Application of Marte Meo® counselling with people with behavioural variant frontotemporal dementia and their primary carers (AMEO-FTD) – a non-randomized mixed-method feasibility study

Berwig

Dinand

Becker³

et al. 2020

Pilot Feasibility Stud

Self Cite

View full text Add to dashboard Cite

show abstract

“…Frequently, needs assessment separates the evaluation of different people (professionals, family caregiver, and person with dementia) (Callahan et al, 2006;Johansson, Eklund, & Gosman-Hedstrom, 2010). The assessment of needs should be taken into account the past life experiences, cultural background, preferences, and identities (Holmerova et al, 2016) and joint together the recipient of needs, the caregivers, and the professionals (Dinand, Nover, Holle, Zischka, & Halek, 2016).…”

Section: Discussionmentioning

confidence: 99%

The relationship between frailty, functional dependence, and healthcare needs among community‐dwelling people with moderate to severe dementia

Abreu

Tolson

Jackson

et al. 2018

Health Soc Care Community

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This paper examines the healthcare needs of community‐dwelling older people living in Porto, Portugal, diagnosed with moderate or severe dementia, linked to functional dependency, cognitive decline, limitations in the activities of daily life, and frailty levels. A sample of 83 participants was recruited. Data were collected between 2013 and 2017. A sociodemographic questionnaire, the Clinical Dementia Rating (CDR), the Barthel Index (BI), the Lawton and Brody Instrumental Activities of Daily Living (IADL) Scale, and the Edmonton Frail Scale (EFS) were used. A set of 26 healthcare needs was defined to support the assessment. The Pearson chi‐square or Fisher's exact test (as appropriate) was used to examine the association of the needs (unmet and met) with the levels of dementia and frailty. Participants were diagnosed previously with moderate or severe dementia and benefited from a structured home‐care program. There was a high number rated as “severe dementia,” “fully dependent,” “severely or fully dependent in the activities of daily living (ADL),” and “severe frailty.” There were statistically significant differences among needs identified in people with moderate or severe dementia and moderate or severe frailty. The most prevalent healthcare needs in the sample were food preparation, medication/taking pills, looking after their home, toilet use, sensory problems, communication/interaction, bladder, bowels, eating and drinking, memory, sleeping, and falls prevention. In particular, the study identifies a set of needs that are present simultaneously in both frailty and dementia stages. This study underlines that despite well‐structured home‐care programs for people with dementia, unmet health needs remain. Timely healthcare needs assessment may help professionals to avoid fragmented care and to tailor quality‐integrated interventions, including the emotional and psychological balance of the caregiver.

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“…La edad promedio de presentación de los casos fue de 40 años, consistente con lo descrito en la literatura, pero se debe tener en cuenta que el rango de edad puede fluctuar entre 31 a 70 años de edad (6,7) . La gran mayoría de afectados son menores de 60 años, población económicamente activa, lo cual genera problemas sociales y económicos en la familia (8) ; en el primer caso reportado, este fue abandonado por su esposa, porque dejó de ser el sustento económico de su familia, en tanto que en el segundo, fue la esposa quien tuvo que asumir los cuidados del paciente y los gastos económicos familiares.…”

Section: Discussionunclassified

Ludopatía y epilepsia en demencia frontotemporal: reporte de dos casos

Castro‐Suárez¹,

Martinez²,

Meza‐Vega

2016

Rev Peru Med Exp Salud Publica

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Frontotemporal dementia is a neurodegenerative disorder of which the behavioral variant is most common. This condition is currently considered the most common cause of dementia in people younger than 60 years. Here, we present two unrelated cases in which the typical symptoms were cognitive and behavioral progressive deterioration and psychiatric disorders such as disinhibition, impulsive acts, apathy, lack of empathy, stereotypies, and changes in eating habits. The first case exhibited pathological gambling as the initial symptom and resided in a psychiatric facility for a year. Notably, this was the second such case in Latin America and one of only a few such cases reported worldwide. The second case presented with epileptic seizures during evolution. In both cases, brain magnetic resonance revealed left-predominant frontotemporal atrophy, and alterations in executive function were evident during neuropsychological assessments.

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What is known about the subjective needs of people with behavioural variant frontotemporal dementia? A scoping review

Cited by 5 publications

References 38 publications

Application of Marte Meo® counselling with people with behavioural variant frontotemporal dementia and their primary carers (AMEO-FTD) – a non-randomized mixed-method feasibility study

Application of Marte Meo® counselling with people with behavioural variant frontotemporal dementia and their primary carers (AMEO-FTD) – a non-randomized mixed-method feasibility study

The relationship between frailty, functional dependence, and healthcare needs among community‐dwelling people with moderate to severe dementia

Ludopatía y epilepsia en demencia frontotemporal: reporte de dos casos

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