Quality of life in persons with dementia using regional dementia care network services in Germany: a one-year follow-up study

Abstract

BackgroundThe majority of individuals with dementia live in the community; thus, regional dementia care networks are becoming increasingly more important for the provision of care. To date, four different types of dementia care networks have been identified in Germany (stakeholder, organisation, hybrid, mission); however, the effect on the quality of life of persons with dementia using such network services has not yet been examined. Moreover, the possible differences in the effect on the quality of life among the four types of dementia care networks have not been investigated. Therefore, the aim of the present study was to describe the changes over time in the quality of life of persons with dementia, assessing the association with the different types of dementia care networks.MethodsWithin the DemNet-D study, face-to-face interviews with persons with dementia and their primary caregivers were conducted to collect data of typical outcome parameters, such as quality of life (Quality of Life Alzheimers Disease: QoL-AD), sociodemographic data, social index (Scheuch−Winkler), depression (Geriatric Depression Scale: GDS), challenging behaviour (Cohen−Mansfield Agitation Inventory: CMAI), capacities of daily living (Instrumental Activity of Daily Living: IADL), impairment due to dementia (FAST), and caregiver burden. In addition to these parameters, the differences in quality of life scores among the four types of dementia care networks were analysed using multi-level analysis.ResultsIn total, 407 persons with dementia (79.1 years; 60.1% female) and their caregivers were included in the analysis. Over 75% of the persons with dementia showed moderate to (very) severe impairments of dementia and at least one challenging behaviour. At baseline, 60.6% had a low social index. Quality of life was stable over one-year on a level slightly above average (baseline 29.1; follow-up 28.7). Multi-level analyses (p < 0.001; R2 = 0.183) show that persons with dementia with higher QoL-AD scores at baseline were associated with a decline at follow-up. No significant differences among the types of dementia care networks were found.ConclusionUsers of dementia care network services showed a stable QoL-AD score over time at a level slightly above average, indicating no decrease or worsening over time as expected. Therefore, dementia care network services can be considered as a beneficial model of care in terms of the quality of life of persons with dementia, regardless of their special organisational type.

Quality of life in patients with severe mental illness: a cross-sectional survey in an integrated outpatient health care model

“…No or only limited associations were observed with pharmacological or non-pharmacological treatments [48,49]. However, a recent German study showed a stable QoL over time in users of dementia care network services at a level slightly above average, indicating no decrease or worsening over time, as could have been expected [50].…”

Perceived health, caregiver overload and perceived social support in family caregivers of patients with Alzheimer’s: Gender differences

“…There are multiple studies concluding that the physical and emotional ramifications for family members stemming from delivering care to a patient with Alzheimer's disease have an impact on caregiver overload and, subsequently, on the cessation of care‐giving (Abreu, Rodrigues, Sequeira, Pires, & Sanhudo, 2018; Chiao, Wu, & Hsiao, 2015; Ruiz Fernández & Ortega Galán, 2019). Caregiver overload manifests itself as a state of emotional exhaustion, stress and fatigue (Cabote, Bramble, & McCann, 2015; Gräske et al., 2018) and, furthermore, as many other consequences reflected in caregivers feeling dissatisfied with their overall health (Millenaar et al., 2016). Social dysfunction, anxiety and insomnia are prevalent symptoms in family caregivers of patients with dementia of the Alzheimer's type (Ruiz Fernández & Ortega Galán, 2019; Varik, Medar, & Saks, 2019).…”

The impact of different researchers to capture quality of life measures in a dementia randomised controlled trial

“…This appears to be supported by the findings in this study. Whilst this can be seen in QoL studies more broadly, this appears to be more prominent in cases where the same researcher undertakes both assessments [ 11 , 14 ]. Indeed, a paper [ 3 ] highlighted the importance of establishing rapport in quantitative assessments to encourage participants to respond more openly and honestly.…”