Background: We aimed to identify factors associated with the quality of life (QoL) of ‘persons with dementia’ (PWDs) and their family carers. Method: Two-hundred and thirty dyads of PWDs and their family carers were included. The PWDs were assessed with the Neuropsychiatric Inventory (NPI-Q), two Activities of Daily Living (ADL) scales, the Cornell Scale and the QoL-Alzheimer’s Disease scale (QoL-AD; self- and proxy-reported scores). The carers were assessed with the QoL-AD and the Geriatric Depression Scale. Results: Factors associated with self-reported QoL were depression (β = –0.26, p < 0.001) and impaired ADL (β = –0.26, p < 0.001) and with proxy-rated QoL were NPI (β = –0.18, p = 0.02), depression (β = –0.32, p < 0.001) and impaired ADL (β = –0.43, p < 0.001). Factors associated with QoL in carers living together with the PWDs were depression (β = –0.56, p < 0.001) and having a hobby (β = 0.19, p = 0.01), whereas depression was associated with QoL in those who lived separately from the PWD (β = –0.60, p < 0.001). Conclusion: Depression and impaired ADL were associated with the self- and proxy-rated QoL of the PWDs, whereas depression in the carers negatively affected their QoL.
Background: The global health challenge of dementia is exceptional in size, cost and impact. It is the only top ten cause of death that cannot be prevented, cured or substantially slowed, leaving disease management, caregiver support and service innovation as the main targets for reduction of disease burden. Institutionalization of persons with dementia is common in western countries, despite patients preferring to live longer at home, supported by caregivers. Such complex health challenges warrant multicomponent interventions thoroughly implemented in daily clinical practice. This article describes the rationale, development, feasibility testing and implementation process of the LIVE@Home.Path trial. Methods: The LIVE@Home.Path trial is a 2-year, multicenter, mixed-method, stepped-wedge randomized controlled trial, aiming to include 315 dyads of home-dwelling people with dementia and their caregivers, recruited from 3 municipalities in Norway. The stepped-wedge randomization implies that all dyads receive the intervention, but the timing is determined by randomization. The control group constitutes the dyads waiting for the intervention. The multicomponent intervention was developed in collaboration with user-representatives, researchers and stakeholders to meet the requirements from the national Dementia Plan 2020. During the 6-month intervention period, the participants will be allocated to a municipal coordinator, the core feature of the intervention, responsible for regular contact with the dyads to facilitate L:
BackgroundThe use of music as therapy in multidisciplinary end-of-life care dates back to the 1970s and nowadays music therapy (MT) is one of the most frequently used complementary therapy in in-patient palliative care in the US. However existing research investigated music therapy’s potential impact mainly from one perspective, referring to either a quantitative or qualitative paradigm. The aim of this review is to provide an overview of the users’ and providers’ perspectives on music therapy in palliative care within one research article.MethodsA systematic literature search was conducted using several databases supplemented with a hand-search of journals between November 1978 and December 2016. Inclusion criteria were: Music therapy with adults in palliative care conducted by a certified music therapist. Both quantitative and qualitative studies in English, German or a Scandinavian language published in peer reviewed journals were included. We aimed to identify and discuss the perspectives of both patients and health care providers on music therapy’s impact in palliative care to forward a comprehensive understanding of it’s effectiveness, benefits and limitations. We investigated themes mentioned by patients within qualitative studies, as well as commonly chosen outcome measures in quantitative research. A qualitative approach utilizing inductive content analysis was carried out to analyze and categorize the data.ResultsTwelve articles, reporting on nine quantitative and three qualitative research studies were included. Seven out of the nine quantitative studies investigated pain as an outcome. All of the included quantitative studies reported positive effects of the music therapy. Patients themselves associated MT with the expression of positive as well as challenging emotions and increased well-being. An overarching theme in both types of research is a psycho-physiological change through music therapy.ConclusionsBoth quantitative as well as qualitative research showed positive changes in psycho-physiological well-being. The integration of the users´ and providers´ perspectives within future research applicable for example in mixed-methods designs is recommended.
Family members are often the care providers of individuals with dementia, and it is assumed that the need for this will increase. There has been little research into the association between the burden of care and the caregiver's sense of coherence or receipt of social support. This study examined the relationship between the social support subdimensions and sense of coherence and the burden of care among older people giving care to a partner with dementia. The study was a cross-sectional observation study of 97 individuals, ≥65 years old and living with a partner who had symptoms of dementia. We used the Informant Questionnaire on Cognitive Decline in the Elderly, the Relative Stress Scale, the Social Provisions Scale, the Sense of Coherence Scale, and a questionnaire on sociodemographic variables. We used multiple regression analysis in a general linear model procedure. We defined statistical significance as p < 0.05. With adjustments for sociodemographic variables, the association with burden of care was statistically significant for the subdimension attachment (p < 0.01) and for sense of coherence (p < 0.001). The burden of care was associated with attachment and with sense of coherence. Community nurses and other health professionals should take necessary action to strengthen attachment and sense of coherence among the caregivers of people with dementia. Qualitative studies could provide deeper understanding of the variation informal caregivers experience when living together with their partner with dementia.
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