Interventions to support people with dementia and their informal caregivers during the transition from home care to nursing home care – a protocol for a systematic review / Interventionen zur Unterstützung von Menschen mit Demenz und ihren Angehörigen während des Übergangs von der häuslichen Pflege ins Pflegeheim – ein Studienprotokoll für eine systematische Übersichtsarbeit

Alzheimer’s disease and vascular dementia are chronic and degenerative diseases caused by neurodegeneration (Prince et al., 2013). They mainly affect older people and often cause disability and dependency (Sousa et al., 2009). It is estimated that approximately 35.6 million people worldwide suffer from dementia; in Germany, more than 1.5 million people are currently affected by this disorder (Prince et al., 2013). Furthermore, projections for Germany assume that by 2050, as a result of the population growing older, there will be 2.6 million people suffering from dementia (Leicht & König, 2012). The majority of people with dementia live in their own homes and most have at least one informal caregiver, usually a spouse, a partner or a relative (Brodaty & Donkin, 2009). These informal caregivers provide a substantial amount of the care and support that may be physically, emotionally and socially demanding. They face many obstacles as they combine caregiving at home with other demands, including employment, career and relationships, and they are at an increased risk of becoming burdened or stressed, of having sleep disturbances or depression and a variety of other health complications (Rose & Lopez, 2012). The nature of progression of dementia means that the level of care and burden on informal caregivers tends to increase over time. When informal caregivers are unable to care for a person with dementia at home at a certain time point, the decision about nursing home placement is inevitable. This period is described as a transition from home to nursing home. Transitions are characterised by different dynamic stages, milestones and turning points, and can be defined through processes and outcomes (Meleis, 2010). In Germany, up to 80% of people with dementia are admitted to a nursing home because of disease progression (Leicht & König, 2012). Between 75% and 90% of people with dementia are placed in a nursing home as a result of changes in dementia severity, behavioural disturbances, night-time misbehaviour, progressive mental deterioration, wandering, caregivers’ burden as well as the inability of informal caregivers to maintain care (Luppa, Luck, Brähler, König & Riedel-Heller, 2008; Sury, Burns & Brodaty, 2013). While nursing home placement helps to reduce the direct care of informal caregivers, it does not necessarily reduce informal caregiver distress and burden (Brodaty & Donkin, 2009). Following nursing home placement, there are other tasks and demands for informal caregivers to manage, such as administrative tasks, communication and coordination with healthcare professions or dealing with financial matters (Strang, Koop, Dupuis-Blanchard, Nordstrom & Thompson, 2006; Bramble, Moyle & McAllister, 2009). Finally, dementia caregiving does not end with nursing home placement.

As a consequence, this period can be a difficult transition for both sides - for people with dementia and for their informal caregivers. This period refers to the time prior to admission when admission is contemplated through to an adjustment period after admission into a nursing home (Afram, Verbeek, Bleijlevens & Hamers, 2014). It is associated with many changes prior to, during and after admission. Problems reported by informal caregivers during and after the transition period are related to emotional concerns, such as self-doubt, feeling guilty and regretting the placement decision as well as feelings of loneliness and isolation (Davies & Nolan, 2004; Afram, Verbeek, Bleijlevens & Hamers, 2014). Other reported issues prior to and during admission include lack of knowledge about dementia and its prognosis, not being informed about available care alternatives, not being informed about financial options or simply being unprepared for the transition period with little support offered to informal caregivers (Bramble, Moyle & McAllister, 2009; Givens, Lopez, Mazor & Mitchell, 2012; Sury, Burns & Brodaty, 2013). Additional problems were addressed prior to and during admission in terms of insufficient contact with and little information from healthcare professions (Bramble, Moyle & McAllister, 2009) and after admission, the issues mentioned referred to dissatisfaction with staff communication (Bramble, Moyle & McAllister, 2009). Not only informal caregivers but also people with dementia are concerned. The transition from their home into a nursing home is a decisive experience, representing loss of their home, neighbourhood and time with family and friends compared with previous periods (Sury, Burns & Brodaty, 2013). Furthermore, being admitted to a nursing home is often associated with anxiety, which may have a negative impact on the quality of life or general well-being (Scocco, Rapattoni & Fantoni, 2006). It is known that unmet needs, as well as a lack of stimulating activities or training for memory and/or sensory problems are associated with poorer mental health and increased behavioural problems during and after this period (Hancock, Woods, Challis & Orrell, 2006). Achterberg, Pot, Kerkstra & Ribbe (2006) reported that after admission, nearly 90% of nursing home residents showed behaviuoral and neuropsychiatric symptoms associated with a lower quality of life or depression.

If people with dementia, however, have been informed about or involved in the decision-making process and their informal caregivers have received support, they were more likely to be satisfied with the decision (Sury, Burns & Brodaty, 2013). Prior to and during the care-transition period, informal caregivers pointed out specific needs for formal support, such as being receiving education or counseling with regard to dementia. Furthermore, they expressed needs for practicing communication and learning how to communicate better with persons with dementia and a need for getting support to handle the situation (Bramble, Moyle & McAllister, 2009). Regarding the time after nursing home placement, informal caregivers have a need for skills in self-care, such as caring for their own mental and physical health (Afram, Verbeek, Bleijlevens & Hamers, 2014). It was also reported that interprofessional collaboration between healthcare professionals and informal caregivers can help to ease the transition for informal caregivers, as well as to improve the quality of life for people with dementia (Sury, Burns & Brodaty, 2013). Finally, it is important that healthcare services are arranged well and that people with dementia and their informal caregivers receive the support they need. Meleis and Trangenstein (1994) and Meleis, Sawyer, Im, Hilfinger and Schumacher (2000) established a theory of transition that recognises modifying factors that could facilitate or inhibit a successful transition to a nursing home (e.g., preparation, cultural attitudes, interaction, socioeconomic status). This also included the experiences made by people with dementia and caregivers during such transitions (coping strategies, social engagement, communication with healthcare professionals) and also the outcomes (health, skills in managing a transition and integrative identity) (Gaugler, Roth, Haley & Mittelman, 2011). This theory may also serve as a useful guide to help nurses and other healthcare professionals in identifying appropriate strategies for supporting people with dementia and their informal caregivers during the period of nursing home admission (Davies, 2005; Rose & Lopez, 2012).

Regarding the care of people with dementia, many healthcare professionals are involved, such as nurses, occupational therapists, social workers, physiotherapists, speech therapists, psychologists, doctors and other professions as well as volunteers (NICE & SCIE, 2007). They provide complex interventions to support people with dementia and their informal caregivers through building up relationships, teaching skills, providing training programmes, education and counselling, helping with conflict resolution and care planning. For example, interventions for people with dementia include (a) training for people, who are dependent, in activities of daily living (ADL), (b) cognitive training, (c) sensory stimulation, (d) activity exercises to improve physical functions, (e) therapeutic communication strategies, (f) measures to promote patient safety and to reduce the risk of falls, (g) measures to prevent and manage agitated behaviour and to provide support for informal caregivers, (h) promoting psychoeducational-skill building, (i) reducing emotional distress, (j) involving informal caregivers in the plan of care, (k) organising and coordinating services and (l) giving psychotherapy-counselling as well as (m) advice for physical environmental modification (Steultjens et al., 2004; Joosse, Palmer & Lang, 2011; Kaur, Sharma & Mittal, 2012; Kim, Yoo, Jung, Park & Park, 2012; Elvisha, Levera, Johnstonea, Cawleya & Keadya, 2013). However, this support should be available and coordinated among the various service providers and healthcare professionals, in particular to support people with dementia and their informal caregivers as well as to avoid delays and waiting times for services (Caron, Ducharme & Griffith, 2006). Questions arise as to how healthcare professionals can support people with dementia and their informal caregivers during the care-transition period. We will carry out this systematic review in order to (1) identify interventions that could support people with dementia and their informal caregivers during the transition from home care to nursing home care, (2) synthesise the available evidence of the identified healthcare interventions (e.g. nursing, occupational therapy, physiotherapy) and (3) examine whether the identified interventions have been systematically developed, evaluated and implemented according to the approach for development and evaluation suggested by the UK Medical Research Council (MRC) Framework.

The systematic review aims to answer the following three research questions:

Which interventions might work or fail to be effective supporting people with dementia and their informal caregivers during the transition period from home care to nursing home care?

A preliminary systematic literature search was performed in order to check whether current systematic reviews (SRs), integrative reviews (IRs) or literature reviews (LRs) dealing with this topic already exist. The search was performed in the following electronic databases: Cochrane Database of Systematic Reviews, Medline (via Pubmed) and CINAHL. In addition, we searched the International Register for Reviews PROSPERO to identify on-going reviews to avoid accidental duplication. However, no SRs, IRs or LRs about supporting people with dementia and their informal caregivers during the transition from home care to nursing home care have been conducted. Therefore, there is a call for a SR to synthesise the available evidence of healthcare interventions (e.g. nursing interventions, occupational therapy interventions, physiotherapy interventions) to support people with dementia and their informal caregivers during this period.

This systematic review will be conducted according to the recommendations specified in the Cochrane Handbook for Intervention Reviews V.5.1.0 (Higgins & Green, 2011) and reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement upon completion of the systematic review (Moher, Liberati, Tetzlaff & Altman, 2009; Moher, Liberati, Tetzlaff & Altman, 2010). This protocol has been registered on the National Institute of Health Research (NIHR) Prospective Register of Systematic Reviews (PROSPERO, 2015: CRD42015019839). It is based on the `‘PRISMA-P 2015 statement` (Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols), a reporting guideline that defines standards of a robust protocol for a systematic review and gives adequate consideration to relevant aspects in the preparation of systematic reviews (Moher et al., 2015). With regard to the `‘PRISMA-P 2015 statement`, 14 of 17 Items have been taken into account for this protocol, the exceptions being items 15a, 15b, 15c, 16 and 17, which will not be applied in this systematic review.

We will develop the search strategy according to the Cochrane Handbook of Systematic Reviews of Interventions, part 2, chapter 6, version 5.1.0 (Higgins & Green, 2011) and the standards for literature searches (Booth, 2006; Sinclair et al., 2013).

Support for informal caregivers and/or treatment of people with dementia during the transition from home care to nursing home care is of importance, as it is known to have negative consequences on their physical and psychosocial health, general well-being or quality of life (Scocco, Rapattoni & Fantoni, 2006; Bramble, Moyle & McAllister, 2009; Givens, Lopez, Mazor & Mitchell, 2012; Afram, Verbeek, Bleijlevens & Hamers, 2014). This paper describes the research protocol of the forthcoming systematic review. The protocol has been designed to meet PRISMA standards (Liberati et al., 2009; Moher, Liberati, Tetzlaff & Altman, 2009; Moher, Liberati, Tetzlaff & Altman, 2010; Moher et al., 2015) and is being disclosed so that our methods can be reproducible and evaluated against the final analysis and interpretation of findings. This review will summarise the body of evidence of interventions of people with dementia and their informal caregivers across the continuum of therapeutic treatment, educational support or nursing care. It is also of interest to determine whether the identified interventions for supporting people with dementia and their informal caregivers have been systematically developed, evaluated and implemented for a better understanding as to why interventions might work or fail to be effective. Thus we will get an overview of the existing knowledge on treatment programs and initiatives that can be used to improve the quality of treatment or healthcare provision for people with dementia or their informal caregivers. Whereas most strategies emphasise delaying transitions from home to nursing home placement (Mittelman, Haley, Clay & Roth, 2006) and devote less attention to supporting people with dementia and their informal caregivers during this transition period, this systematic review is timely and warranted. Findings will be of potential interest to healthcare providers or policy-makers and will offer valuable information for further national dementia strategies.