A meta-ethnography of shared decision-making in mental health care from the perspective of staff and service users.

Background: Human rights, recovery, and value-based approaches are integral to strategic changes and development in mental health care. Successfully integrating such person-centred values in mental health services requires a paradigm shift from traditional biomedical models of care to a more human rights-based approach. An important aspect of this is shared decision making (SDM) between mental health staff and service users.

Development of a novel patient reported outcome measure for health-related quality of life in amyotrophic lateral sclerosis (PROQuALS): study protocol.

Background: Patient reported outcome measures (PROMs) can be used to assess the impact of health conditions upon an individual's health-related quality of life (HRQoL). Whilst PROMs have been used to quantify the HRQoL impact of amyotrophic lateral sclerosis (ALS), existing instruments may not fully capture what matters to people living with ALS (plwALS) or be appropriate to be used directly to inform the cost-effectiveness of new treatments. This highlights a need for a new condition-specific PROM that can both capture what's important to plwALS and be used in economic evaluation.

Measuring Health-Related Quality of Life in Amyotrophic Lateral Sclerosis: A Systematic Review and Conceptual Framework.

Background And Objectives: The assessment of health-related quality of life (HRQoL) in patients with amyotrophic lateral sclerosis (ALS) is heterogeneous and inconsistent. The objectives of this study were (1) to develop a comprehensive conceptual framework of HRQoL in ALS and (2) map the content of existing patient-reported outcome measures (PROMs) used in ALS to this novel framework.

Methods: Our model of HRQoL in ALS (Health-related Quality of life in Amyotrophic Lateral Sclerosis, QuALS) was developed from a systematic literature review and consultative input from key stakeholders (patients, carers, and health care professionals).

Exploring the impact of care home environments and culture on supporting residents to 'wander' safely.

Objectives: Up to 60% of people with dementia living in care homes will 'wander' at some point, which has typically been seen by staff as a problematic behaviour. A range of non-pharmacological interventions have been tested to either support or prevent wandering. However, even recent innovative practice continues to maintain a focus on reducing or preventing wandering.

Cancer care for people with dementia: Literature overview and recommendations for practice and research.

As many countries experience population aging, patients with cancer are becoming older and have more preexisting comorbidities, which include prevalent, age-related, chronic conditions such as dementia. People living with dementia (PLWD) are vulnerable to health disparities, and dementia has high potential to complicate and adversely affect care and outcomes across the cancer trajectory. This report offers an overview of dementia and its prevalence among patients with cancer and a summary of the research literature examining cancer care for PLWD.

Balancing the needs of individuals and services in cancer treatment for people with dementia: A focused ethnographic study.

Background: Managing multiple conditions is difficult for patients and their families, increasing complexity in care. Two of the most common long-term conditions, cancer and dementia, both disproportionately affect older adults. However, little is known about the needs and experiences of those living with both conditions, which could inform practice in the area.

Maintaining and improving mouth care for care home residents: A participatory research project.

Background: Many people residing in nursing or residential care homes (also called long-term care facilities) live with physical or cognitive difficulties. Staff working in these environments often help residents (particularly those with more advanced dementia) with their personal care needs, including maintaining mouth care and health. Poor oral health is associated with many difficulties, including increased risk of respiratory problems, pain and discomfort.

Staff experiences of implementing Dementia Care Mapping to improve the quality of dementia care in care homes: a qualitative process evaluation.

Background: Dementia Care Mapping™ (DCM) is a widely used, staff-led, psychosocial intervention to support the implementation of person-centred care. Efficacy evaluations in care homes have produced mixed outcomes, with implementation problems identified. Understanding the experiences of staff trained to lead DCM implementation is crucial to understanding implementation challenges, yet this has rarely been formally explored.

Relational counselling as a psychosocial intervention for dementia: Qualitative evidence from people living with dementia and family members.

Counselling and other psychotherapeutic interventions can be offered to people with dementia and their caregivers, to treat specific conditions or symptoms (e.g. affective disorders such as depression).

A biopsychosocial interpretation of the Neuropsychiatric Inventory - Nursing Home assessment: reconceptualising psychiatric symptom attributions.

Background: The Neuropsychiatric Inventory (NPI) is predicated on the assumption that psychiatric symptoms are manifestations of disease. Biopsychosocial theories suggest behavioural changes viewed as psychiatric may also arise as a result of external behavioural triggers. Knowing the causes of psychiatric symptoms is important since the treatment and management of symptoms relies on this understanding.

Navigating cancer treatment and care when living with comorbid dementia: an ethnographic study.

Objectives: The risks of developing cancer and dementia increase as we age; however, this comorbidity remains relatively under-researched. This study reports on the challenges that people affected by comorbid cancer and dementia face when navigating engagement with cancer treatment within secondary care.

Materials And Methods: An ethnographic study recruiting 17 people with cancer and dementia, 22 relatives and 19 oncology staff in two UK National Health Service Trusts.

Measuring adolescent attitudes towards dementia: The revalidation and refinement of the A-ADS.

The A-ADS is one the first validated measures of attitudes of dementia in adolescents, though further validation is needed. 630 adolescents were recruited from secondary schools in England. A Principal Component Analysis was completed ( = 230) followed by a Confirmatory Factor Analysis ( = 400).

Decision-making in cancer care for people living with dementia.

Objective: Increasing numbers of people are expected to live with comorbid cancer and dementia. Cancer treatment decision-making for these individuals is complex, particularly for those lacking capacity, requiring support across the cancer care pathway. There is little research to inform practice in this area.

The effect of a dementia awareness class on changing dementia attitudes in adolescents.

Background: Current evidence suggests that negative and stigmatising attitudes towards dementia may develop at a young age. There are a number of dementia education and awareness initiatives aimed at reducing stigma, though they have not been robustly evaluated to establish the impact on dementia attitudes or suitability in adolescent populations. This study explored the efficacy and satisfaction of one such initiative (Dementia Friends) in a British adolescent sample.

The development and validation of the adolescent level of contact with dementia scale.

Objectives: As the number of people living with dementia increases, reducing stigma has become a policy priority. One way of decreasing stigma is through contact with the stigmatised group. However, the impact of this is difficult to establish due to a lack of validated measures suitable for adolescents.

Effectiveness of Dementia Care Mapping™ to reduce agitation in care home residents with dementia: an open-cohort cluster randomised controlled trial.

Objectives: Agitation is common and problematic in care home residents with dementia. This study investigated the (cost)effectiveness of Dementia Care Mapping™ (DCM) for reducing agitation in this population.

Method: Pragmatic, cluster randomised controlled trial with cost-effectiveness analysis in 50 care homes, follow-up at 6 and 16 months and stratified randomisation to intervention ( = 31) and control ( = 19).

Enabling people with dementia to access and receive cancer treatment and care: The crucial role of supportive networks.

Objectives: Despite cancer and dementia being conditions in which prevalence increases with age, there remains limited research on the cancer treatment and care needs of this population. Our study aimed to address this gap and this paper reports on the role of supportive networks in enabling people with dementia to access cancer treatment and care.

Materials And Methods: An ethnographic study involving seventeen people with cancer and dementia, 22 relatives and nineteen oncology staff.

Dementia Care Mapping™ to reduce agitation in care home residents with dementia: the EPIC cluster RCT.

Background: The quality of care for people with dementia in care homes is of concern. Interventions that can improve care outcomes are required.

Objective: To investigate the clinical effectiveness and cost-effectiveness of Dementia Care Mapping™ (DCM) for reducing agitation and improving care outcomes for people living with dementia in care homes, versus usual care.

Perceptions and attitudes towards dementia among university students in Malaysia.

Background: One of the major challenges worldwide is the stigma associated with dementia. There is limited dementia awareness within Malaysian communities, including levels of confusion regarding the differences between dementia and the usual ageing progress, which can lead to delays in support seeking. The need for additional training and education for healthcare professionals has been highlighted.

How Should We Capture Health State Utility in Dementia? Comparisons of DEMQOL-Proxy-U and of Self- and Proxy-Completed EQ-5D-5L.

Background: Dementia-specific and proxy-completed preference-based measures have been proposed for use in intervention studies involving people living in residential care, in instances where generic, self-reported preference-based measures have been deemed inappropriate.

Objective: This study was conducted to investigate the construct validity, criterion validity, and responsiveness of DEMQOL-Proxy-U and of self- and proxy-completed EQ-5D-5L.

Methods: The analysis used a 3-wave, individual-level data set of 1004 people living with dementia in residential care that included self-completed EQ-5D-5L and formal-carer and informal-carer proxy-completed EQ-5D-5L and DEMQOL-Proxy-U utility values, in addition to other nonutility cognitive measures (Functional Assessment Staging [FAST], Clinical Dementia Rating [CDR], Cohen-Mansfield Agitation Inventory [CMAI]) and health-related quality of life (HRQOL) measures (nursing home version of the Quality of Life with Alzheimer's disease scale [QOL-AD-NH], Quality of Life in Late-Stage Dementia [QUALID] scale).

Exploring the role of external experts in supporting staff to implement psychosocial interventions in care home settings: results from the process evaluation of a randomized controlled trial.

Background: Psychosocial interventions offer opportunities to improve care for people with dementia in care homes. However, implementation is often led by staff who are not well prepared for the role. Some interventions use external experts to support staff.

Exploring self-report and proxy-report quality-of-life measures for people living with dementia in care homes.

Purpose: There are many validated quality-of-life (QoL) measures designed for people living with dementia. However, the majority of these are completed via proxy-report, despite indications from community-based studies that consistency between proxy-reporting and self-reporting is limited. The aim of this study was to understand the relationship between self- and proxy-reporting of one generic and three disease-specific quality-of-life measures in people living with dementia in care home settings.

Collecting self-report research data with people with dementia within care home clinical trials: Benefits, challenges and best practice.

One-third of people with dementia live in care home settings and in order to deliver better evidence-based care, robust research including clinical trials is required. Concerns have been raised by researchers about the capacity of care home residents with dementia to participate in clinical trials. This includes self-report measures, completion of which researchers have suggested may be unreliable or impossible and may cause distress for residents.

Pro re nata prescribing and administration for neuropsychiatric symptoms and pain in long-term care residents with dementia and memory problems: a cross-sectional study.

Background Prescribing, dispensing and administering pro re nata (PRN; as needed or necessary, as determined by an individual) medicines to people with intermittent or short-term conditions is a potential area for medication errors and inappropriate prescribing and administration. In people with dementia, regular PRN medicines use can demonstrate good practice when appropriate or poor in situations where their use is not recommended. However, the frequency of PRN prescription and administration within long-term care settings (care homes) for people with dementia is largely unknown.