ATENDER, SANCIONAR Y ERRADICAR LA VIOLENCIA CONTRA LAS MUJERES

Introduction

For this thesis, a review was required to identify and examine the existing literature surrounding the evidence base for the attributes of resident-centred care that may aid the management of BtC and therefore improve quality of life for people with dementia living in CHs. The management of BtC is widely linked with a variety of professions including pharmacy, psychiatry, sociology, psychology and medicine, and therefore this review was conducted inclusive of those disciplines, to gain an understanding of how BtC is managed in practice. It critiqued the results from a series of structured literature searches, conducted in order to identify existing gaps in knowledge and key issues surrounding managing BtC in dementia, and to gain an awareness of where the boundaries of these gaps are. This informed the research questions and consequently the study design.

Aim

The literature review aimed to answer the following questions:

1. What non-pharmacological strategies are used to manage BtC and what is the evidence for their effectiveness?

2. What is the prevalence of antipsychotic use in CHs, what mechanisms have been used to ensure use is appropriate and is there capacity for reducing their use?

3. What are the experiences of formal carers in managing BtC, and what training exists to enable them to manage BtC?

4. What is known about the design of the CH environment and its impact on BtC?

Search terms

Medical Subject Headings (MeSH) and key-words were identified by consideration of relevant past articles on BtC in dementia. Details of the searches performed, search terms used for each

electronic database and process of paper selection are included in Appendix 1. The following words have been used as search terms: Dementia (MAJR), Alzheimer Disease (MAJR), nursing homes (MeSH), care homes, behavior (MeSH), intervention, attitude of health personnel (MeSH),

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non-pharmacological (MeSH), antipsychotic agents (MeSH) and environment (MeSH). The MeSH terms were exploded to include all categories within them.

The literature search was conducted in two phases:

1. Searching for systematic reviews of all non-pharmacological interventions relating to the management of BtC, and adding to the results, any papers limited to non-pharmacological strategies to manage BtC.

2. Searching for any publications with relevance to the other search questions.

Search method

To capture as many relevant citations as possible, electronic international and national bibliographical databases were searched for all articles that were relevant to managing BtC in CHs, up to November 2015. The databases searched were: EBSCO Host Electronic Database (MEDLINE, PsycINFO, and CINAHL Plus with Full Text) and PubMed in order to cover the range of medical and sociological articles. Bibliographies of articles which were identified as being relevant to the research topic were searched manually, as were reference lists of key papers and the Banerjee 1 report. The searching of multiple databases led to duplication of some articles; therefore the total number of studies omits any duplicates.

Inclusion and exclusion criteria

Searches were restricted to the title and abstract of articles. Published articles were only included in this review if they met the inclusion criteria outlined in Table 2.1. Research that was

unpublished at the time of the final review was excluded due to challenges in gaining full access to the articles.

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Inclusion Criteria

Primary quantitative, qualitative or mixed method research studies, exploring:

Measurement AND/OR description of managing BtC in dementia. Papers investigating dementia care in CHs.

AND/OR

Non-pharmacological strategies of managing BtC in CHs

Prevalence of antipsychotic use in CH residents with dementia and capacity for reducing their use CH staff opinion AND/OR experience of BtC

The design of the CH environment

Reviews of research relating to managing BtC in dementia

Exclusion Criteria

Research relating to non-human subjects

Research relating to other mental illnesses and learning difficulties Research relating to end of life care

Research relating to hospital-based care

Research relating to non-professional caregiver AND/OR or family perspective AND/OR orientation AND/OR burden

Research relating to subjects exclusively under 65 years

Table2.1: Criteria for including or excluding articles resulting from the literature search into the management of BtC

Selection method and data extraction

A selection for inclusion was performed: on reviewing titles and abstracts, all studies that did not clearly meet the inclusion criteria were excluded from the review. If the studies appeared to meet the inclusion criteria or if there was any doubt, the full article was reviewed.

The following characteristics of each included study were documented: 1. Country and setting of study

2. Study design

3. Participants: inclusion and exclusion criteria; number of patients; sex; age; type of dementia and diagnostic instruments used; severity of the dementia and diagnostic instruments used

4. Type of method in the experimental condition(s); type of support in the control condition(s), features of methods

5. Outcome measures/instruments (BtC); number of participants who completed the study in the experimental and control conditions

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Literature review

The literature search identified both descriptive and analytical papers employing both qualitative and quantitative methods. For ease of purpose, this literature review has been divided into four sections, each section pertaining to the body of literature it sought to appraise: these relate to the questions which the review sought to answer.

What non-pharmacological strategies are used to manage BtC and what is the

evidence for their effectiveness?

An important synthesis of current evidence, Dickson et al’s March 2012 report commissioned by the Department of Health 57 included 30 systematic reviews of evidence from 220 studies investigating the use of NPIs for BPSD, in order to report on the scientific evidence of the effectiveness of NPIs in managing BtC. Of the 30 studies included, ten reviews presented results from studies conducted in long term care settings. Eighteen reviews reported results from acute care settings (including day or psychiatric hospitals), participants’ homes, community-based settings or primary care provision, while two reviews did not clearly report the intervention setting. The review prioritised Cochrane reviews and randomised controlled trials (RCTs), examining eight broad categories of NPI: sensory enhancement and relaxation, social contact, cognitive and emotional approaches, physical activity and exercise, environmental modifications, behaviour management techniques, caregiver training and support and special care units. It found that NPIs showing a possible effect, but deficient in robust evidence were massage or touch, music therapy, multi-sensory stimulation and physical exercise. There was no substantial evidence to make recommendations regarding the use of relaxation therapy, white noise, transcutaneous electrical nerve stimulation, pet or animal therapy, one-to-one stimulation and environmental modifications. Contradictory evidence was found for light therapy, simulated interaction or family video, cognitive stimulation, reality orientation and reminiscence. The only NPI found to have no effect in managing BtC was validation therapy (used as a way of communicating with

disorientated elderly people, validation therapy is based on the principle that confused

behaviours have a meaning to the person with dementia; the response to these behaviours may not be correcting the person, but empathetically talking to them about their issue). Caregiver training and support, and behaviour management techniques were found to have the most reliable evidence for managing BtC; however the authors acknowledge the difficulty in identifying the exact component of training that resulted in effectively managing BtC.

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Seitz’s systematic review published in February 2012 58 was not included in the Dickson review, but some of the reviewed studies were included in the Dickson 57 review. Seitz’s review warrants discussion here, due to its focus on long term care settings. It explored the effectiveness and feasibility of using NPIs for BtC in 40 studies conducted in long term care settings. Any changes in the severity of BtC symptoms were measured using outcome measures reported in the included studies. Sixteen of the 40 studies reported statistically significant results in favour of non- pharmacological interventions, including staff training, mental health consultations, exercise, recreational activities and music therapy or forms of sensory stimulation; however 75% of the interventions needed resources outside of the care setting, or additional time requirements from staff. The authors posit that, at the time, there were limited large-scale studies of high quality in this area, and further research was required.

A more recent systematic review conducted in 2014 measured the clinical effectiveness and cost- effectiveness of sensory, psychological and behavioural interventions for managing agitation in older adults with dementia59. It included 160 quantitative studies of NPI. Similarly to the Dickson review57, with only 33 moderately sized RCTs recruiting more than 45 participants, a lack of substantial evidence resulted in the authors being unable to make recommendations for many of the interventions, despite some high-quality studies. Person-centred care, communication skills and dementia care mapping, sensory therapy activities, and structured music therapies were all reported to reduce agitation in CH residents with dementia. There was no substantial evidence to make recommendations for the use of aromatherapy, light therapy or training family carers to use psychological intervention to reduce agitation. The authors note the need for permanently implemented evidence-based treatments to manage agitation in CH residents with dementia, however a lack of robust evidence makes this problematic.

An overview of 21 systematic reviews published in 2011 60, which contained different papers to the Dickson review could also not make any recommendations for specific NPIs for BtC, despite finding some positive effects. Similarly to the Dickson review 57, the evidence was contradictory, insufficient or lacking.

A 2012 Cochrane review and meta-analysis 61 reviewing 18 trials examining functional analysis (used as a behavioural intervention, functional analysis explores the meaning or purpose of a person’s behaviour with the aim of reducing distress) in BtC found that as a result of variable study designs, it was not possible to detach functional analysis from aspects of other

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interventions, despite showing a possible benefit. Therefore, no conclusions were made as to the efficacy of functional analysis in managing BtC in dementia.

Evidence exists that supports the use of multidisciplinary interventions 62, individualised activities 63 _{and multi-modal non-drug therapies} 64_{, which were not included in Dickson’s review} 57_{. In 2002,} Opie et al 62 conducted a randomized controlled trial of multidisciplinary interventions for BtC in nursing home residents with dementia. An individualised treatment plan was implemented by a multi-disciplinary team consisting of a psychiatrist, a psychologist and two nurses, for 99 residents who had been identified by CH staff as having BtC. Residents were randomly assigned to an early group or late group, and repeated observations were conducted to identify behavioural patterns, triggers, usual treatments and staff approaches. The early group received intervention after four days of observation, while the late group received intervention seven days after. Three

interventions - psychosocial, nursing and medical - were used and often combined: 46/99 received all three interventions, 47/99 received two, and six residents received only one

intervention. A powerful Hawthorne effect was detected, through improvements in both groups, in the frequency and severity of BtC. However, a modest but significant reduction in BtC including restlessness, verbal disruption and inappropriate behaviours (p<0.005) suggested that

individualised psychosocial, nursing and medical interventions can lead to reductions in BtC. The authors discussed the feasibility and acceptability of strategies prior to commencing the study: those interventions that were unacceptable or impractical to CH staff were discarded early on. At follow up, care staff rated 73.5% of interventions as either very acceptable or acceptable; 14.3% of interventions as neutral, and 12.2% as unacceptable.

The results of a RCT exploring the effects of individualised activities, in order to increase positive affect and reduce negative affect and behaviour in 180 residents with dementia living in one large American nursing home 63, were published in 2015. Ninety-three residents received normal care, while the remaining 87 residents were assigned to one of two intervention groups: an attention control group (n=43), or individualised psychosocial intervention (IPI) (n=44). Individuals in the attention control group participated in standardised one-to-one activities with nursing assistants, while the IPI group participated in a nursing assistant-led activity matched to their abilities and interests. Outcome measures were assessed through direct observation by a research assistant, in the form of ten-minute ‘behaviour streams’, whereby residents’ behaviour, location, and affect state were noted, along with the onset and cessation of each set of behaviours. Behaviours were then coded into three outcome categories: affect; behavioural states (non-verbal behaviours) and behavioural events (verbal behaviours). The two intervention groups experienced more pleasure,

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alertness, positive verbal behaviour, positive touch and engagement in comparison to the control group. However the attention group experienced increased anger, uncooperativeness and negative verbal behaviour compared to both the IPI and control groups. Individualised intervention may elicit more positive outcomes in behaviour and affect than standardised

interventions or activities. The results of this study are limited however: the study was conducted in a homogeneous sample of Caucasian, Jewish elderly residents, from one nursing home. Also, research assistants observing the interventions may have been sensitive to being observed by staff and residents, and their direct observations and note taking may have been affected. A 2012 longitudinal RCT investigating the effectiveness of multi-modal, non-drug therapy on dementia symptoms in 139 residents from five German nursing homes, found an association between improved levels of mood and memory, and the multi-modal therapy 64. Over a period of six months, residents (n=71) participated in spiritual, physical cognitive and daily living

interventions for two hours on six days of the week. The control group (n=70) received usual care. Two residents were excluded due to an incorrect diagnosis of dementia. Dementia symptoms were measured using the Nurses Observation Scale for Geriatric Patients (NOS-GER) sum score. Throughout the six-month observation period, mood, memory and social behaviour all improved. As such, the authors suggested that all nursing home residents and staff would profit indirectly as a consequence of improved behaviour. The study lacked a control group which received a

placebo, rather than usual care. Data were recorded by observer rating scales without blinding, and as such the findings may be biased - the authors reject this as ‘unlikely’.

A 2011 Japanese observational study 65 of 12 experienced care staff investigated the ‘repeated appeal to return home’: the repetitious requests of CH residents to go back to their home, or to a place where ‘one has a history’ including calls of ‘I want to go home’, ‘I must go home’, and ‘I don’t want to be here any longer’. A five-step framework to managing these behaviours was suggested by the care staff group: Listen to the voice (appeal) and go with the flow of the

behaviour; learn about the inner experience (fear, anxiety, discontent, loneliness); learn about the contextual environment (work history, life history, lifestyle); reflect on the care environment (restraint, care staff); find the keyword. The authors believe that the process of identifying needs, and implementing a five-step process as a problem-identifying and problem-solving method, could be used as a focus to managing the underlying needs of people with dementia, which could not only enhance the quality of life of residents with dementia but also increase staff satisfaction and reduce burnout and turnover. The study was limited to care staff working for one company, and therefore the findings are not generalisable. Additionally, the staff included in the study were

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identified as ‘experienced’ by their quantity of work experience, however no formal definition of an ‘experienced’ worker existed and the authors did not volunteer one. Finally, the context of the study is unique, and there may be many cultural variations. The third step (learning about the contextual environment) may differ between cultures, for example.

Dickson’s review 57 found no substantial evidence to make recommendations for pet or animal therapy as a non-pharmacological intervention. However two studies published since Dickson’s review sought to investigate the efficacy of animal therapy on BPSD in CH residents. The first, a RCT 66, randomly assigned 65 nursing home residents to a control group, who received normal routine, or an intervention group, who received normal routine with Animal Assisted Therapy (AAT), over a 10 week period. AAT is used primarily to encourage cognitive, emotional and social capabilities in people with dementia 67, and can include a variety of animals in service in health care including cats, dogs, birds and fish 68. In the intervention group, residents maintained the frequency and severity of their symptoms of agitation, aggression and depression. In the control group, symptoms of agitation or aggression, and depression significantly increased over the ten weeks. The authors posit that AAT may delay the progression of behavioural symptoms associated with dementia. The second RCT investigated a dog-assisted intervention on BtC, in eight Swedish nursing homes over six months 69. Thirty-three residents were recruited, and assigned to a control group (n=13) or intervention group (n=20). The intervention consisted of interaction with a therapy dog, which was captured in videos by the researcher over 10 sessions of 30-45 minutes once or twice per week. Results displayed no significant changes in the intervention group for BtC between baseline and follow up. Mean scores for non-aggressive behaviours and behavioural symptoms decreased between baseline and follow up, indicating fewer but not statistically significant BtC were present at follow up, while verbal agitation scores increased significantly. The authors acknowledge that the value of dog-assisted therapy requires further investigation, but suggest that it may complement pharmacological practice in managing or reducing BtC.

In summary, the evidence pertaining to the effectiveness of NPIs to manage BtC is disparate and inconclusive. The most reliable evidence for managing BtC encourages caregiver training and support, and behaviour management techniques; however the exact training programmes that result in effectively managing BtC are unclear. Indeed, Dickson et al acknowledged the difficulty in identifying the exact component of training that resulted in effectively managing BtC57. Rigorous conclusions regarding the most effective strategies to manage BtC have not been formed. As the most scientifically rigorous testing method, the RCT is regarded as the ‘gold standard’. Testing the efficacy and feasibility of NPIs has been attempted through RCTs, however it is impossible to blind

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participants and researchers, and there is a requirement for individualised intervention70. While the Dickson review57 is an important synthesis of the evidence base for NPIs, it has limitations: the original studies included in each systematic review were not reviewed by Dickson et al, and the quality of those studies was assessed by other authors. The systematic reviews included in this review used variable terminology, and were not consistent in categorising NPIs; as such, there are problems in trying to compare their findings. Study designs are varied, often small in size, use varying assessment tools and have methodological limitations, and as such, they cannot entirely fill the gaps in the evidence base. It also appears that the majority of studies investigating NPIs do not consider any potential harmful effects on participants. A number of the interventions

reviewed did not focus on the person with dementia or their care staff, and therefore it remains unclear how these interventions could be used in CHs. In addition, CH staff will require more knowledge in order to conduct these interventions, and studies have found CH staff lacking in this