Claire Goodman

Primary care and dementia: 1. diagnosis, screening and disclosure†

To write a narrative review of the roles of primary care practitioners in caring for people with dementia in the community.

Improving recruitment of older people to research through good practice

There is widespread evidence both of the exclusion of older people from clinical research, and of under-recruitment to clinical trials. This review and opinion piece provides practical advice to assist researchers both to adopt realistic, achievable recruitment rates and to increase the number of older people taking part in research. It analyses 14 consecutive recently published trials, providing the number needed to be screened to recruit one older participant (around 3:1), numbers excluded (up to 49%), drop out rates (5-37%) and whether the planned power was achieved. The value of planning and logistics are outlined, and approaches to optimising recruitment in hospital, primary care and care home settings are discussed, together with the challenges of involving older adults with mental incapacity and those from minority groups in research. The increasingly important task of engaging older members of the public and older patients in research is also discussed. Increasing the participation of older people in research will improve the generalisability of research findings and inform best practice in the clinical management of the growing older population.

Psychosocial Factors That Shape Patient and Carer Experiences of Dementia Diagnosis and Treatment: A Systematic Review of Qualitative Studies

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.

End of life care for community dwelling older people with dementia: an integrated review

To review the evidence for end‐of‐life care for community dwelling older people with dementia (including those resident in care homes).

Comorbidity and dementia: a scoping review of the literature

BackgroundEvidence suggests that amongst people with dementia there is a high prevalence of comorbid medical conditions and related complaints. The presence of dementia may complicate clinical care for other conditions and undermine a patient’s ability to manage a chronic condition. The aim of this study was to scope the extent, range and nature of research activity around dementia and comorbidity.MethodsWe undertook a scoping review including all types of research relating to the prevalence of comorbidities in people with dementia; current systems, structures and other issues relating to service organisation and delivery; patient and carer experiences; and the experiences and attitudes of service providers. We searched AMED, Cochrane Library, CINAHL, PubMed, NHS Evidence, Scopus, Google Scholar (searched 2012, Pubmed updated 2013), checked reference lists and performed citation searches on PubMed and Google Scholar (ongoing to February 2014).ResultsWe included 54 primary studies, eight reviews and three guidelines. Much of the available literature relates to the prevalence of comorbidities in people with dementia or issues around quality of care. Less is known about service organisation and delivery or the views and experiences of people with dementia and their family carers. There is some evidence that people with dementia did not have the same access to treatment and monitoring for conditions such as visual impairment and diabetes as those with similar comorbidities but without dementia.ConclusionsThe prevalence of comorbid conditions in people with dementia is high. Whilst current evidence suggests that people with dementia may have poorer access to services the reasons for this are not clear. There is a need for more research looking at the ways in which having dementia impacts on clinical care for other conditions and how the process of care and different services are adapting to the needs of people with dementia and comorbidity. People with dementia should be included in the debate about the management of comorbidities in older populations and there needs to be greater consideration given to including them in studies that focus on age-related healthcare issues.

Potentially inappropriate prescribing in older people with dementia in care homes: a retrospective analysis.

AbstractBackground: Older people in general and care home residents in particular are at high risk of suboptimal or inappropriate prescribing. To date, research into potentially inappropriate prescribing (PIP) has not focused on care home residents and/or has not utilized the recently developed and validated Screening Tool of Older Persons’ potentially inappropriate Prescriptions (STOPP) criteria. Objective: The aim of this study was to estimate the prevalence of PIP in older people with dementia living in six residential care homes in England, using the STOPP criteria. Methods: A retrospective analysis was conducted using medication data collected for older people with dementia in six residential care homes in England who participated in the prospective, longitudinal EVIDEM — End of Life (EoL) study. Of the 133 residents recruited to the study, medication administration records were available for and reviewed at two timepoints (approximately 16 weeks apart) for 119 residents and 110 residents, respectively. The prevalence of PIP at these timepoints was determined using 31 of the 65 STOPP criteria applicable when there is no access to residents’ medical records. Results: At the first timepoint, 68 potentially inappropriate medications (PIMs) were identified. Fifty-five residents (46.2%) were prescribed one or more PIM(s), eleven (9.2%) were prescribed two or more PIMs and two (1.7%) were prescribed three PIMs. Thirteen of the 31 STOPP criteria utilized in this study (41.9%) were used to identify PIP. Long-term (i.e. >1 month) neuroleptics (antipsychotics) were the most frequently prescribed PIMs (n = 25; 21.0%), followed by non-steroidal anti-inflammatory drugs (NSAIDs) for >3 months, proton pump inhibitors (PPIs) at maximum therapeutic dosage for >8 weeks, tricyclic antidepressants (TCAs) in patients with dementia and long-term (i.e. >1 month), long-acting benzodiazepines.At the second timepoint, 57 PIMs were identified; 45 residents (40.9%) were prescribed one or more PIM(s) and 10 (9.1%) were prescribed two or more PIMs, but only one resident (0.9%) was prescribed three PIMs. Of the 31 STOPP criteria utilized in this study, ten (32.3%) were used to identify PIP. Long-term (i.e. >1 month) antipsychotics were again the most frequently prescribed PIMs (n = 21; 19.1%), followed by PPIs at maximum therapeutic dosage for >8 weeks, NSAIDS for >3 months and TCAs in patients with dementia.A significant correlation was found at both timepoints between the number of medicines prescribed and occurrence of PIP. Conclusions: This study found that over two-fifths of older people with dementia residing in six residential care homes in England were prescribed at least one PIM at each timepoint. Long-term (i.e. >1 month) antipsychotics, NSAID use for >3 months and PPI use at maximum therapeutic dosage for >8 weeks were the most prevalent PIMs. Regular medication review that targets, but is not limited to, these medications is required to reduce PIP in the residential care home setting. The STOPP criteria represent a useful tool to facilitate such review in this patient population.

Primary care and dementia: 2. long-term care at home: psychosocial interventions, information provision, carer support and case management

To write a narrative review of the role of primary care physicians in the long‐term care of people with dementia living at home, with a focus on psychosocial interventions, the provision of information and carer support, behavioural and psychological symptoms and case management.

An uncertain future: The unchanging views of care home residents about living and dying

Background: Older people living in a care home have a limited life expectancy, and care homes are an important setting for end-of-life care provision. Aim: This research aimed to explore the views, experiences and expectations of end-of-life care among care home residents to understand if key events or living in a residential environment influenced their views. Design: The research used a prospective design. The paper draws on the qualitative interviews of 63 care home residents who were interviewed up to three times over a year. This was a sub-sample of the larger data set of 121 care home residents. Setting/Participants: The residents were recruited from six care homes (providing personal care with no on-site nursing) in the UK. Results: Four main themes were identified; Living in the Past, Living in the Present, Thinking about the Future and Actively Engaged with planning the future. Many residents said they had not spoken to the care staff about end-of-life care; many assumed their family or General Practitioner would take responsibility. Conclusions: Core to the older person’s ability to discuss end-of-life care is their acceptance of being in a care home, the involvement of family members in making decisions and the extent to which they believed they could influence decision making within their everyday lives. Advance care plans should document ongoing dialogue. These findings can inform how primary health and palliative care services introduce, discuss and tailor existing frameworks and programmes of end-of-life care.

Culture, consent, costs and care homes: Enabling older people with dementia to participate in research

Objectives: To describe factors that support and inhibit recruitment and participation of people with dementia living in care homes. Method: This article focuses on the methods used to recruit people with dementia to a longitudinal study that employed a mixed-method design to track events and care that older people with dementia experienced over two years in six care homes. A staged approach to recruitment was adopted involving separate meetings with staff, residents and relatives. Individual consent was secured with residents with dementia who could consent in the moment and for those without capacity, through mail and follow-up telephone contact with consultees. Data were collected on the frequency of meetings, issues raised by staff, consultees and people with dementia as well as the overall time taken to complete recruitment. Results: Over five months, 133 older people with dementia were recruited (62% of sampling frame). The recruitment process was supported or hindered by the number of individuals and organisations that needed to be consulted, the care home culture, staffs understanding of how people with dementia can be involved in research, and how they interpreted their role as mediators, protectors and gatekeepers. Conclusions: Care homes are isolated communities of care. To achieve the research objectives, researchers in the initial stages need to consider the philosophical underpinnings of individual care homes, and the politics of hierarchy both within the care home and between it, and health professionals. There is a need to develop credible infrastructures of support that enable people with dementia to participate in research.

The effectiveness of inter-professional working for older people living in the community: a systematic review

Health and social care policy in the UK advocates inter-professional working (IPW) to support older people with complex and multiple needs. Whilst there is a growing understanding of what supports IPW, there is a lack of evidence linking IPW to explicit outcomes for older people living in the community. This review aimed to identify the models of IPW that provide the strongest evidence base for practice with community dwelling older people. We searched electronic databases from 1 January 1990-31 March 2008. In December 2010 we updated the findings from relevant systematic reviews identified since 2008. We selected papers describing interventions that involved IPW for community dwelling older people and randomised controlled trials (RCT) reporting user-relevant outcomes. Included studies were classified by IPW models (Case Management, Collaboration and Integrated Team) and assessed for risk of bias. We conducted a narrative synthesis of the evidence according to the type of care (interventions delivering acute, chronic, palliative and preventive care) identified within each model of IPW. We retrieved 3211 records and included 37 RCTs which were mapped onto the IPW models: Overall, there is weak evidence of effectiveness and cost-effectiveness for IPW, although well-integrated and shared care models improved processes of care and have the potential to reduce hospital or nursing/care home use. Study quality varied considerably and high quality evaluations as well as observational studies are needed to identify the key components of effective IPW in relation to user-defined outcomes. Differences in local contexts raise questions about the applicability of the findings and their implications for practice. We need more information on the outcomes of the process of IPW and evaluations of the effectiveness of different configurations of health and social care professionals for the care of community dwelling older people.