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1.  A protocol for a systematic review of research on managing behavioural and psychological symptoms in dementia for community-dwelling older people: evidence mapping and syntheses 
Systematic Reviews  2013;2:70.
Background
Non-cognitive behavioural and psychological symptoms of dementia affect up to 90% of people with dementia during the disease course and result in distress, increased carer burden, high service utilization and unwanted moves to care homes. Research has focused on long-term settings and has not considered people with dementia living at home and at different stages of the disease trajectory. Our aim is to review systematically the evidence concerning non-pharmacological strategies to minimise behavioural and psychological symptoms in community-dwelling older people with dementia.
Methods/Design
Our approach is a two-stage co-design: a systematic mapping of the broad evidence around behavioural and psychological symptoms followed by an in-depth systematic review of studies of non-pharmacological interventions for behavioural and psychological symptoms from the perspective of their impact on community-dwelling older people with dementia and their carers. The review will include published literature involving a wide range of electronic databases using sensitive and comprehensive searches and lateral searching including checking citations.
We will produce a descriptive map of the studies by design and by the focus of interventions and apply further inclusion criteria, developed in conjunction with lay experts, to select studies for an in-depth systematic review that will include independent quality assessment and detailed data extraction by two reviewers.
The review process will be integrated with stakeholder meetings and a multidisciplinary expert advisory group to guide the review parameters and shape the research questions on the management of behavioural and psychological symptoms in people with dementia. Because studies are likely to be diverse in methodology and interventions, we will conduct a narrative synthesis of the in-depth systematic review. If appropriate, we will pool studies in a meta-analysis. We will explore review findings at both stages through focus groups and interviews with service providers, practitioners, people with dementia and carers.
Discussion
This integrated review in collaboration with key stakeholders will synthesise research evidence to identify appropriate interventions for effective management of behavioural and psychological symptoms that supports people with dementia living at home and their carers, and which reflects their priorities. It will make recommendations for research and practice.
Study registration
PROSPERO registration number: CRD42013004344
doi:10.1186/2046-4053-2-70
PMCID: PMC3765841  PMID: 23985083
Behavioural and psychological symptoms; Community dwelling; Dementia; Synthesis; Systematic review
2.  Integrated working between residential care homes and primary care: a survey of care homes in England 
BMC Geriatrics  2012;12:71.
Background
Older people living in care homes in England have complex health needs due to a range of medical conditions, mental health needs and frailty. Despite an increasing policy expectation that professionals should operate in an integrated way across organisational boundaries, there is a lack of understanding between care homes and the National Health Service (NHS) about how the two sectors should work together, meaning that residents can experience a poor "fit" between their needs, and services they can access. This paper describes a survey to establish the current extent of integrated working that exists between care homes and primary and community health and social services.
Methods
A self-completion, online questionnaire was designed by the research team. Items on the different dimensions of integration (funding, administrative, organisational, service delivery, clinical care) were included. The survey was sent to a random sample of residential care homes with more than 25 beds (n = 621) in England in 2009. Responses were analysed using quantitative and qualitative methods.
Results
The survey achieved an overall response rate of 15.8%. Most care homes (78.7%) worked with more than one general practice. Respondents indicated that a mean of 14.1 professionals/ services (other than GPs) had visited the care homes in the last six months (SD 5.11, median 14); a mean of .39 (SD.163) professionals/services per bed. The most frequent services visiting were district nursing, chiropody and community psychiatric nurses. Many (60%) managers considered that they worked with the NHS in an integrated way, including sharing documents, engaging in integrated care planning and joint learning and training. However, some care home managers cited working practices dictated by NHS methods of service delivery and priorities for care, rather than those of the care home or residents, a lack of willingness by NHS professionals to share information, and low levels of respect for the experience and knowledge of care home staff.
Conclusions
Care homes are a hub for a wide range of NHS activity, but this is ad hoc with no recognised way to support working together. Integration between care homes and local health services is only really evident at the level of individual working relationships and reflects patterns of collaborative working rather than integration. More integrated working between care homes and primary health services has the potential to improve quality of care in a cost- effective manner, but strategic decisions to create more formal arrangements are required to bring this about. Commissioners of services for older people need to capitalise on good working relationships and address idiosyncratic patterns of provision to care homes.The low response rate is indicative of the difficulty of undertaking research in care homes.
doi:10.1186/1471-2318-12-71
PMCID: PMC3534387  PMID: 23151009
3.  Psychosocial Factors That Shape Patient and Carer Experiences of Dementia Diagnosis and Treatment: A Systematic Review of Qualitative Studies 
PLoS Medicine  2012;9(10):e1001331.
A systematic review of qualitative studies conducted by Frances Bunn and colleagues identifies and describes the experiences of patients and caregivers on receiving and adapting to a diagnosis of dementia.
Background
Early diagnosis and intervention for people with dementia is increasingly considered a priority, but practitioners are concerned with the effects of earlier diagnosis and interventions on patients and caregivers. This systematic review evaluates the qualitative evidence about how people accommodate and adapt to the diagnosis of dementia and its immediate consequences, to guide practice.
Methods and Findings
We systematically reviewed qualitative studies exploring experiences of community-dwelling individuals with dementia, and their carers, around diagnosis and the transition to becoming a person with dementia. We searched PubMed, PsychINFO, Embase, CINAHL, and the British Nursing Index (all searched in May 2010 with no date restrictions; PubMed search updated in February 2012), checked reference lists, and undertook citation searches in PubMed and Google Scholar (ongoing to September 2011). We used thematic synthesis to identify key themes, commonalities, barriers to earlier diagnosis, and support identified as helpful. We identified 126 papers reporting 102 studies including a total of 3,095 participants. Three overarching themes emerged from our analysis: (1) pathways through diagnosis, including its impact on identity, roles, and relationships; (2) resolving conflicts to accommodate a diagnosis, including the acceptability of support, focusing on the present or the future, and the use or avoidance of knowledge; and (3) strategies and support to minimise the impact of dementia. Consistent barriers to diagnosis include stigma, normalisation of symptoms, and lack of knowledge. Studies report a lack of specialist support particularly post-diagnosis.
Conclusions
There is an extensive body of qualitative literature on the experiences of community-dwelling individuals with dementia on receiving and adapting to a diagnosis of dementia. We present a thematic analysis that could be useful to professionals working with people with dementia. We suggest that research emphasis should shift towards the development and evaluation of interventions, particularly those providing support after diagnosis.
Please see later in the article for the Editors' Summary.
Editors' Summary
Background
Dementia is a decline in mental ability severe enough to interfere with daily life. Alzheimer disease is the most common type of dementia. People with dementia usually have problems with two or more cognitive functions—thinking, language, memory, understanding, and judgment. Dementia is rare before the age of 65, but about a quarter of people over 85 have dementia. Because more people live longer these days, the number of patients with dementia is increasing. It is estimated that today between 40 and 50 million people live with dementia worldwide. By 2050, this number is expected to triple.
One way to study what dementia means to patients and their carers (most often spouses or other family members) is through qualitative research. Qualitative research aims to develop an in-depth understanding of individuals' experiences and behavior, as well as the reasons for their feelings and actions. In qualitative studies, researchers interview patients, their families, and doctors. When the studies are published, they usually contain direct quotations from interviews as well as summaries by the scientists who designed the interviews and analyzed the responses.
Why Was This Study Done?
This study was done to better understand the experiences and attitudes of patients and their carers surrounding dementia diagnosis. It focused on patients who lived and were cared for within the community (as opposed to people living in senior care facilities or other institutions). Most cases of dementia are progressive, meaning symptoms get worse over time. Diagnosis often happens at an advanced stage of the disease, and some patients never receive a formal diagnosis. This could have many possible reasons, including unawareness or denial of symptoms by patients and people close to them. The study was also trying to understand barriers to early diagnosis and what type of support is useful for newly diagnosed patients and carers.
What Did the Researchers Do and Find?
The researchers conducted a systematic search for published qualitative research studies that reported on the experience, beliefs, feelings, and attitudes surrounding dementia diagnosis. They identified and reviewed 102 such studies. Among the quotations and summaries of the individual studies, they looked for prominent and recurring themes. They also compared and contrasted the respective experiences of patients and carers.
Overall, they found that the complexity and variety of responses to a diagnosis of dementia means that making the diagnosis and conveying it to patients and carers is challenging. Negative connotations associated with dementia, inconsistent symptoms, and not knowing enough about the signs and symptoms were commonly reported barriers to early dementia diagnosis. It was often the carer who initiated the search for help from a doctor, and among patients, willingness and readiness to receive a diagnosis varied. Being told one had dementia had a big impact on a patient's identity and often caused feelings of loss, anger, fear, and frustration. Spouses had to adjust to increasingly unequal relationships and the transition to a role as carer. The strain associated with this often caused health problems in the carers as well. On the other hand, studies examining the experience of couples often reported that they found ways to continue working together as a team.
Adjusting to a dementia diagnosis is a complex process. Initially, most patients and carers experienced conflicts, for example, between autonomy and safety, between recognizing the need for help but reluctance to accept it, or between living in the present and dealing with anxiety about and preparing for the future. As these were resolved and as the disease progressed, the attitudes of patients and carers towards dementia often became more balanced and accepting. Many patients and their families adopted strategies to cope with the impact of dementia on their lives in order to manage the disease and maintain some sort of normal life. These included practical strategies involving reminders, social strategies such as relying on family support, and emotional strategies such as using humor. At some point many patients and carers reported that they were able to adopt positive mindsets and incorporate dementia in their lives.
The studies also pointed to an urgent need for support from outside the family, both right after diagnosis and subsequently. General practitioners and family physicians have important roles in helping patients and carers to get access to information, social and psychological support, and community care. The need for information was reported to be ongoing and varied, and meeting it required a variety of sources and formats. Key needs for patients and carers mentioned in the studies include information on financial aids and entitlements early on, and continued access to supportive professionals and specialists.
What Do These Findings Mean?
Qualitative studies to date on how patients and carers respond to a diagnosis of dementia provide a fairly detailed picture of their experiences. The summary provided here should help professionals to understand better the challenges patients and carers face around the time of diagnosis as well as their immediate and evolving needs. The results also suggest that future research should focus on the development and evaluation of ways to meet those needs.
Additional Information
Please access these websites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1001331.
Wikipedia has pages on dementia and qualitative research (note that Wikipedia is a free online encyclopedia that anyone can edit)
Alzheimer Europe, an umbrella organization of 34 Alzheimer associations from 30 countries across Europe, has a page on the different approaches to research
The UK Department of Health has pages on dementia, including guidelines for carers of people with dementia
MedlinePlus also has information about dementia
doi:10.1371/journal.pmed.1001331
PMCID: PMC3484131  PMID: 23118618
4.  Nurse case management and general practice: implications for GP consortia 
The British Journal of General Practice  2011;61(591):e658-e665.
Background
Case management is widely promoted as a means of ensuring continuity of care, improving patient outcomes, and achieving efficient management of resources. Community matrons have been introduced recently as specialists in the case management of patients with multiple complex problems.
Aim
To understand how nurse case managers are seen by GPs and NHS managers.
Setting
(1) Telephone interviews with 41 community nurse managers recruited from 10 English strategic health authorities and two Welsh health boards; (2) face-to-face interviews with 12 nurse case managers, 12 GPs and five NHS community service managers in three study sites with different population and practitioner characteristics.
Method
Semi-structured individual interviews, by telephone or face to face.
Results
Attitudes among GPs to nurse case managers were shaped by perceptions of the quality of community nursing on the one hand and the perceived benefit of case management as a method of reducing hospital use on the other. The dominant mood was scepticism about the ability of nurse case managers to reduce hospital admissions. Community matrons were seen as staff who were imposed on local health services, sometimes to detrimental effect.
Conclusion
The introduction of case management and community matrons may disrupt existing communities of practice and be perceived negatively, at least in areas where good working relationships between nurses and GPs have developed. Commissioners should be aware of the potential resistance to changes in skill mix and role in nursing services, and promote innovation in ways that minimise disruption to functional communities of practice.
doi:10.3399/bjgp11X601370
PMCID: PMC3177135  PMID: 22152848
case management; comorbidity; elderly; nursing; community health
5.  Models of inter professional working for older people living at home: a survey and review of the local strategies of english health and social care statutory organisations 
Background
Most services provided by health and social care organisations for older people living at home rely on interprofessional working (IPW). Although there is research investigating what supports and inhibits how professionals work together, less is known about how different service models deliver care to older people and how effectiveness is measured. The aim of this study was to describe how IPW for older people living at home is delivered, enacted and evaluated in England.
Method
An online survey of health and social care managers across England directly involved in providing services to older people, and a review of local strategies for older people services produced by primary care organisations and local government adult services organisations in England.
Results
The online survey achieved a 31% response rate and search strategies identified 50 local strategies that addressed IPW for older people living at home across health and social care organisations. IPW definitions varied, but there was an internal consistency of language informed by budgeting and organisation specific definitions of IPW.
Community Services for Older People, Intermediate Care and Re-enablement (rehabilitation) Teams were the services most frequently identified as involving IPW. Other IPW services identified were problem or disease specific and reflected issues highlighted in local strategies. There was limited agreement about what interventions or strategies supported the process of IPW. Older people and their carers were not reported to be involved in the evaluation of the services they received and it was unclear how organisations and managers judged the effectiveness of IPW, particularly for services that had an open-ended commitment to the care of older people.
Conclusion
Health and social care organisations and their managers recognise the value and importance of IPW. There is a theoretical literature on what supports IPW and what it can achieve. The need for precision may not be so necessary for the terms used to describe IPW. However, there is a need for shared identification of both user/patient outcomes that arise from IPW and greater understanding of what kind of model of IPW achieves what kind of outcomes for older people living at home
doi:10.1186/1472-6963-11-337
PMCID: PMC3295707  PMID: 22168957
6.  A systematic review of integrated working between care homes and health care services 
Background
In the UK there are almost three times as many beds in care homes as in National Health Service (NHS) hospitals. Care homes rely on primary health care for access to medical care and specialist services. Repeated policy documents and government reviews register concern about how health care works with independent providers, and the need to increase the equity, continuity and quality of medical care for care homes. Despite multiple initiatives, it is not known if some approaches to service delivery are more effective in promoting integrated working between the NHS and care homes. This study aims to evaluate the different integrated approaches to health care services supporting older people in care homes, and identify barriers and facilitators to integrated working.
Methods
A systematic review was conducted using Medline (PubMed), CINAHL, BNI, EMBASE, PsycInfo, DH Data, Kings Fund, Web of Science (WoS incl. SCI, SSCI, HCI) and the Cochrane Library incl. DARE. Studies were included if they evaluated the effectiveness of integrated working between primary health care professionals and care homes, or identified barriers and facilitators to integrated working. Studies were quality assessed; data was extracted on health, service use, cost and process related outcomes. A modified narrative synthesis approach was used to compare and contrast integration using the principles of framework analysis.
Results
Seventeen studies were included; 10 quantitative studies, two process evaluations, one mixed methods study and four qualitative. The majority were carried out in nursing homes. They were characterised by heterogeneity of topic, interventions, methodology and outcomes. Most quantitative studies reported limited effects of the intervention; there was insufficient information to evaluate cost. Facilitators to integrated working included care home managers' support and protected time for staff training. Studies with the potential for integrated working were longer in duration.
Conclusions
Despite evidence about what inhibits and facilitates integrated working there was limited evidence about what the outcomes of different approaches to integrated care between health service and care homes might be. The majority of studies only achieved integrated working at the patient level of care and the focus on health service defined problems and outcome measures did not incorporate the priorities of residents or acknowledge the skills of care home staff. There is a need for more research to understand how integrated working is achieved and to test the effect of different approaches on cost, staff satisfaction and resident outcomes.
doi:10.1186/1472-6963-11-320
PMCID: PMC3280330  PMID: 22115126
7.  Talking about living and dying with the oldest old: public involvement in a study on end of life care in care homes 
BMC Palliative Care  2011;10:20.
Background
Public involvement in research on sensitive subjects, such as death and dying, can help to ensure that questions are framed to reflect the interests of their peers, develop a shared understanding of issues raised, and moderate the often unequal power relationship between researcher and participant. This paper describes the contribution and impact of older members of a Public Involvement in Research group (PIRg) to a study on living and dying in care homes.
Methods
A longitudinal study, with a mixed method approach, its aims were to capture key experiences, events and change over one year, of older people resident in participating care homes in the East of England. Residents were interviewed up to three times and their case notes were reviewed four times over the year. Interviews were semi structured, and recorded. Four members of a Public Involvement in Research group (PIRg) contributed to preliminary discussions about the research and three were involved with many of the subsequent stages of the research process including the facilitation of discussion groups with residents.
Results
There were three areas where the involvement of the Public Involvement in Research group (PIRg) positively influenced the study process. These were recruitment, governance and safeguarding, and in collaboration with the residents in the care homes, the discussion and interpretation of emergent findings. PIRg members were of similar age to the residents and their involvement provided different and often more reflective insights of the significance of the findings for the participants. There were examples where decision making about the range of PIRg participation was not always negotiable, and this raised issues about power relationships within the team. Nevertheless, PIRg members expressed personal benefit and satisfaction through participating in the research and a commitment to continue to support research with this older age group.
Conclusions
The contribution of the PIRg supported a successful recruitment process that exceeded response rates of other studies in care homes. It safeguarded residents during the conduct of research on a sensitive topic and helped in validating the interview data gathered by the researchers through the discussion groups facilitated by the PIRg. There were power differentials that persisted and affected PIRg participation. The study has showed the value of developing job descriptions and a more formal means of setting out respective expectations. Future research may wish to elicit the views of focal participants in such studies about the mediation of research by public involvement in research.
doi:10.1186/1472-684X-10-20
PMCID: PMC3266630  PMID: 22112207
8.  Sedative load of medications prescribed for older people with dementia in care homes 
BMC Geriatrics  2011;11:56.
Background
The objective of this study was to determine the sedative load and use of sedative and psychotropic medications among older people with dementia living in (residential) care homes.
Methods
Medication data were collected at baseline and at two further time-points for eligible residents of six care homes participating in the EVIDEM-End Of Life (EOL) study for whom medication administration records were available. Regular medications were classified using the Anatomical Therapeutic Chemical classification system and individual sedative loads were calculated using a previously published model.
Results
At baseline, medication administration records were reviewed for 115 residents; medication records were reviewed for 112 and 105 residents at time-points 2 and 3 respectively. Approximately one-third of residents were not taking any medications with sedative properties at each time-point, while a significant proportion of residents had a low sedative load score of 1 or 2 (54.8%, 59.0% and 57.1% at baseline and time-points 2 and 3 respectively). More than 10% of residents had a high sedative load score (≥ 3) at baseline (12.2%), and this increased to 14.3% at time-points 2 and 3. Approximately two-thirds of residents (66.9%) regularly used one or more psychotropic medication(s). Antidepressants, predominantly selective serotonin re-uptake inhibitors (SSRIs), were most frequently used, while antipsychotics, hypnotics and anxiolytics were less routinely administered. The prevalence of antipsychotic use among residents was 19.0%, lower than has been previously reported for nursing home residents. Throughout the duration of the study, administration of medications recognised as having prominent sedative adverse effects and/or containing sedative components outweighed the regular use of primary sedatives.
Conclusions
Sedative load scores were similar throughout the study period for residents with dementia in each of the care homes. Scores were lower than previously reported in studies conducted in long-term care wards which have on-site clinical support. Nevertheless, strategies to optimise drug therapy for care home residents with dementia which rely on clinicians external to the care home for support and medication review are required.
doi:10.1186/1471-2318-11-56
PMCID: PMC3197480  PMID: 21958366
9.  Sustaining innovation in the health care workforce: A case study of community nurse consultant posts in England 
Background
Recruiting, retaining and meeting increasing demand for experienced, qualified nurses is an issue of concern for all health care systems. The UK has been creating clinical career structures for nurses that include innovative posts known as nurse consultants. While the numbers overall appear to have grown over the last eleven years, there is evidence that in some specialities and regions the numbers are decreasing. This paper considers the factors that sustain or curtail workforce innovations through the case example of a cohort of nurse consultants established in one community health service in England.
Methods
A mixed method case study evaluation was undertaken over three years, using interviews, observations, documentary analysis and questionnaires. The final element of data collection was obtained three years later. Data was anonymised, analysed using a framework method and then integrated using a narrative synthesis.
Results
Ten nurse consultant posts were created over a period of two years (2002-2004). Within two years only five posts remained and within five years (2009) only two part time posts, with the original appointees, remained. When the nurse consultants left their posts, these were not replaced. In exploring the interaction between the innovation (the nurse consultant posts), the adoptees (the senior staff in the organisation) and the context (the immediate service colleagues, the service organisation and commissioners as well as the broader NHS policy context) three key factors were identified as influential in the demise of the posts. These were: a) the extent to which there was support for individual nurses rather than the post, b) the extent to which there was an unambiguous and uncontested clinical service requirement for a nurse consultant and c) the extent to which finances for the post were judged as being used to best effect in a service setting.
Conclusions
This case study example demonstrates how tantalisingly close the nurse consultant initiative came to achieving a clinical career pathway for nurses in community services but more work was required to normalise clinician and managers' beliefs in the relevance and need for the role. Those looking to embed these types of nursing workforce innovations should pay due regard to these issues.
doi:10.1186/1472-6963-11-200
PMCID: PMC3170598  PMID: 21854634
10.  Integrated working between primary health care services and care homes for older people: challenges from the approach study 
Introduction
Within the UK health and social care policy is placing an increasing emphasis on improving the quality of care for older people in care homes through integrated working between health and social care services. This study aims to clarify the research available on integrated working and evaluate its impact on older people in order to devise a typology for informing future service development.
Theory
Kodner and Spreeuwenberg [1] argue that patient/person centred integrated working between health and social care should include methods and models which involve the different levels of organisation, management, funding and clinical care within and between them.
Methods
Phase one included a systematic review to evaluate interventions utilising integrated working between care home staff and health care practitioners, and a survey to describe care homes’ experiences of integrated working. Phase one will inform phase two; a case study evaluating six different approaches to integrated working currently in use in three different areas of England.
Results and conclusions
The review found evidence of integrated working between health care and care homes at the patient level of care, but minimal evidence of models that extended beyond this level. Findings from the survey, currently in progress, will also be presented.
Discussion
The discussion will provide an overview of the challenges and issues surrounding integrated working.
PMCID: PMC3031803
integrated working; care homes; older people

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