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.
Highlights
The majority of individuals with dementia live in the community; regional dementia care networks are becoming increasingly more important for the provision of care
Three dementia care networks were identified as Stakeholder, Organisation, or Mission type, each; and the remaining four networks were identified as Hybrid networks
The health-related outcomes regarding dementia show a severe level of impairment by dementia (FAST median: 6) with several consecutive impairments (e.g. Instrumental Activities of Daily Living scale (IADL) mean: 2.0)
Summary
The majority of individuals with dementia live in the community; regional dementia care networks are becoming increasingly more important for the provision of care. 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. Dementia comprises different forms; the most prevalent form is Alzheimer’s disease, which remains incurable It is characterised by a decline in the cognitive functions of affected persons [3]. Informal caregivers predominantly cover the support of persons with dementia [5]; informal caregiving causes stress and psychological distress [6]. These facts raise questions regarding the future adequate provision of care for persons with dementia. To evaluate interventions in dementia care, the quality of life of persons with dementia is seen as an appropriate indicator [8]
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