The effectiveness of interventions on the quality of life of people with major neurocognitive disorder (dementia) in residential long-term care: a systematic review protocol

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Review question/objectiveThe objective of this review is to answer the following question:Which interventions have the best outcomes related to improved quality of life of people with dementia in residential long-term care?In addition, this review will also define the components of the effective interventions.BackgroundThe recently revised Diagnostic and Statistical Manual of Mental Disorders (DSM-V)1 utilizes the term “major neurocognitive disorder” to describe what has previously been known as dementia. However, given that this systematic review reflects previously published literature, the term “dementia” will be used.In 2013, over 35 million people around the world were estimated to have dementia.2 The number of people worldwide with dementia is projected to increase to 65.7 million in 2030 and 115.4 million in 2050, which is approximately a doubling of sufferers every 20 years.2 Dementia is a syndrome of progressive cognitive and functional deterioration which is incurable.2 There are diverse symptoms and various levels of impairment depended on affected brain regions and types of dementia. Typical symptoms in the early phase of illness include memory loss, affected mood and behavior, and indications of depression.3,4 In the intermediate phase, increased communication difficulties, behavior changes such as wandering, agitation and aggression can appear. In the last phase of dementia illness, severe symptoms appear such as unawareness of time, place, inability to recognise familiar people, and severely limited mobility.3,4 The most common type of dementia is Alzheimer's disease which accounts for 60-70% of the incidence of dementia. The remainder include vascular dementia, dementia with Lewy bodies, frontotemporal dementia and so on. There is no known cure or treatment that alters the degenerative process of dementia.4 Having an irreversibly worsening projection, dementia gradually makes affected people increasingly reliant on others for help with daily living, often leading to placement in residential long term care (LTC).4,5Although there are different types and labels of LTC services across the world,5,6 LTC services can be roughly categorized into both home-based services and residential facility-based services.5 Many OECD countries encourage home-based care which enables clients to have more flexibility, independence and self-determination.5 Nonetheless, as problematic behaviors occur and function declines, eventually, people with dementia are likely to require care in a residential LTC facility for ongoing care.7-9 The prevalence of dementia is relatively high in people living in LTC facilities. Estimates of the incidence of dementia widely vary from 40% to 80% in residential LTC facilities.3,10-12 Furthermore, residing in residential LTC tends to be related to a reduced quality of life (QOL) for residents,14,15 and people with dementia have an increased likelihood to face challenges in relation to their human rights and QOL compared to other people,4 as a consequence of decreased cognition, reduced language skills and introspection in people with dementia. Accordingly, improving and assuring QOL of LTC residents with dementia is imperative.A number of studies concerning QOL have been undertaken with little consensus on the definition of QOL, because of its subjective qualities.6,16-19 The World Health Organization Quality of Life [WHOQOL] group involving 15 countries defined QOL as “an individual's perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, and standards and concerns”.20(p.1405) Furthermore, the WHOQOL group illustrated that contributors of QOL can include multiple features such as physical, psychological, spiritual, social, and environmental aspects. Hence the meaning of QOL is broad, with multiple facets.Many studies suggest that diverse indicators are correlated to QOL of people living in LTC facilities. Khader investigated several factors influencing QOL of the residents in three nursing homes in Jordan.21 The results indicated that the levels of QOL were determined by numerous factors such as age, level of education, and marital status. For instance, in relation to length of stay, residents who had lived for eleven years or more had a decreased level of QOL in most domains as compared with those who had lived for eleven years and less.21 Robichaud and colleagues also explored QOL indicators in nursing homes from the perspective of residents and their families and identified that feelings of respect, involvement in relationships, professional competency, privacy, staff stability and so on.15Furthermore, the QOL of people with dementia is likely to be more complex compared to those without dementia. Cordner investigated measures of QOL in nursing home residents with advanced dementia.22 This study indicated that higher cognitive function of residents and the application of pain medication lead to a higher QOL, while those with behavior problems had a lower QOL. Another study systematically reviewed 13 studies to investigate factors related to QOL of people with dementia in long-term care facilities.23 This review identified that socio-demographic characteristics, depressive symptoms and anxiety, behavior, dependency in activities of daily living, cognition, severity of dementia and medication use all influence QOL. This review concluded that, particularly, depressive symptoms are reliable factors which are negatively correlated to QOL. From these findings, it may be implied that multifaceted approaches are needed when care services and interventions are applied in order to improve QOL of individuals with dementia living in long term care facilities.As there is currently no known cure for dementia, many studies have been conducted focusing on interventions to improve QOL of people with dementia.24-27 Diverse interventions such as physical activity, psychological therapy, behavioral care or education of staff/care givers are potentially beneficial to people with dementia by improving cognitive and functional capabilities, to postpone deterioration, as well as to reduce behavioral symptoms. Ultimately, the aim of these interventions is to maintain or to improve QOL of individuals with dementia by reducing dementia-associated symptoms and incapacity.26,28-30In recent years, there has been a gradual movement towards the evaluation of LTC services for residents with dementia through evidence of the outcomes of care.4,31-33 This shift seems to be come from the realisation that the significant objective of care provision is to promote QOL of residents, not simply to improve quality of care delivery.32 This suggests that quality of care should be monitored for improving residents' QOL. Similarly, a World Alzheimer Report4 demonstrated that quality of care should be ascertained through QOL or satisfaction of residents in LTC facilities. Traditionally, there are diverse objective measures of resident outcome, such as level of independence,34 cognitive function,25,35 and reduced neuropsychiatric symptoms.36,37 These measures have generally been accepted through their long-lasting use; however, functional improvement does not necessarily mean an enhancement of QOL. For instance, a pilot study of 35 residents with dementia showed that participants receiving cognitive stimulation therapy had a significant improvement in cognitive function but no effect on QOL.38 Another randomized controlled trial including 42 participants with dementia also examined the effect of individual music therapy on agitation and other disruptive behaviors, QOL and medication.39 The results indicated that music therapy reduced agitation, disruptive behavior and prevented medication increases, but music therapy made no difference to QOL. Taking into consideration that enhancing QOL is the significant objective of dementia care,4 it is essential that QOL remains a primary outcome of interventions. In other words, evaluations of the effectiveness of interventions should contain QOL measurements for people with dementia. Accordingly, the application of QOL measurements to the outcome of healthcare interventions may help to define effective and efficient interventions in residential LTC settings.In order to improve QOL, the efforts to find and integrate effective interventions in residential LTC settings should be ongoing. Although several reviews have contributed to identifying various interventions on QOL of residents in LTC facilities,6 or to evaluate the effect of diverse interventions on QOL of people with dementia,40,41 there is so far no overview of the effectiveness of the interventions on QOL of people with dementia in residential LTC facilities. For that reason, the aim of this systematic review is to identify interventions that improve the QOL of people with dementia in residential LTC and to evaluate the effectiveness of the interventions. This will assist healthcare providers in making decisions regarding the implementation of feasible interventions and the development of programs in accordance with their capabilities, resources and resident preferences.

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