Die Rolle pflegender Angehöriger von Menschen mit Demenz in der Bedarfsbestimmung am Beispiel der CarenapD-Studie

Abstract

Need driven dementia care at home requires the use of needs assessments like CarenapD. The CarenapD Manual states that the person with dementia (PwD) and caregivers (CA) should be included in the assessment process. In a pre-post study CarenapD has been applied in PwD (n = 55) and CA (n = 49) by professional staff (n = 15), CA were much more involved than PwD. Needs in PwD in T0 and T1 showed frequently functional needs(50 %), no need were frequently found in dementia-specific needs (42 %) and frequently unmet need was present in social needs (35 %). Burden-related needs in CA were reduced from T0 to T1 in daily difficulties (-14 %), support (-20 %) and breaks from caring (-9 %).This secondary analysis compares the need results of PwD and CA to discuss the unequal involvement of clients. In this secondary analysis needs data of PwD and CA is included. Need in PwD at T0 and T1 showed frequently met functional need (50 %), frequently no need in dementia specific needs (42 %) and high unmet need in social needs (35 %). Burden in CA could be reduced from T0 to T1 in Daily Difficulties (-14 %), Support (-20 %) and Breaks from Caring (9 %). Compared to the literature it is remarkable that a high rate in no need was found in dementia specific needs. Needs of CA show congruent results, it seems to have come to relief of burden in CA. Lack of knowledge and shame in CA as well as the continuous presence of both clients within the assessment process may have caused that dementia-specific needs were not enough addressed. PwD and CA should be actively involved in the assessment process and should contribute their individual point of view, as stated in the CarenapD Manual.

Measuring the Needs of Family Caregivers of People With Dementia: An Assessment of Current Methodological Strategies and Key Recommendations

“…Several studies ( n = 7) assessed both the caregiver and PWD (Bakker et al, 2014; Black et al, 2013; Gaugler et al, 2005; Hodgson, Black, Johnston, Lyketsos, & Samus, 2014; Hughes et al, 2014; Jennings et al, 2015; Stirling et al, 2010) and ranged in sample size from n = 20 dyads to n = 5,831 dyads. The majority of the studies we reviewed were carried out in the United States; other work originated from Greece, Canada, Scotland, Australia, Finland, Germany, Italy, and Austria (Dello Buono et al, 1999; Dimakopoulou, Sakka, Efthymiou, Karpathiou, & Karydaki, 2015; Ducharme et al, 2014; McWalter et al, 1998; Philp et al, 1995; Raivio et al, 2007; Riesner, 2014; Rosa et al, 2010; Stirling et al, 2010; Wancata et al, 2005). One study (Reynolds et al, 2000) utilized data provided by sites in the United Kingdom, Sweden, and the United States.…”

“…The Care needs assessment pack for dementia (CareNap-D; McWalter et al, 1998) was designed for professionals to identify areas of difficulty among PWDs and their caregivers, generate a profile of needs, and define what support is required for unmet needs (Woods & Clare, 2008). Riesner (2014) utilized the CareNap-D to identify the needs of PWDs and their caregivers across time. Results indicate that PWDs had frequent functional needs and unmet social needs while burden-related needs of caregivers decreased across time.…”

Symptom management in complex post-traumatic stress disorder (ICD-11), view and experience of patients and their relatives: a mixed methods approach (Research Proposal)

“…No study was found that dealt with symptom management in the everyday life of adult patients with CPTSD. Patients’ relatives play a significant role in research on caregivers and symptom management [ 19 – 22 ]. The relatives can be both a facilitator and a barrier to patients’ symptom management [ 16 , 23 ].…”