Diagnosis and management of dementia in family practice.

BACKGROUND: Improving quality of care for people with dementia is a high priority. Considerable resources have been invested in financial incentives, guideline development, public awareness and educational programmes to promote earlier diagnosis and better management. OBJECTIVES: Evaluating family physicians' concordance with guidelines on diagnosis and management of people with dementia, from first documentation of symptoms to formal diagnosis. METHOD: Analysis of medical records of 136 people with dementia recruited by 19 family practices in NW London and surrounding counties. RESULTS: Practices invited 763 people with dementia to participate, 167 (22%) agreed. Complete records were available for 136 (18%). The majority of records included reference to recommended blood tests, informant history and caregiver concerns. Presence or absence of symptoms of depression, psychosis, other behavioural and psychological symptoms of dementia, and cognitive function tests were documented in 30%-40% of records. Documentation of discussions about signs and symptoms of dementia, treatment options, care, support, financial, legal and advocacy advice were uncommon. Comparison of these findings from a similar study in 2000-2002 suggests improvements in concordance with blood tests, recording informant history, presence or absence of depression or psychosis symptoms. There was no difference in documenting cognitive function tests. Immediate referral to specialists was more common in the recent study. CONCLUSION: Five years after UK dementia guidelines and immediately after the launch of the dementia strategy, family physicians appeared concordant with clinical guidelines for dementia diagnosis (other than cognitive function tests), and referred most patients immediately. However, records did not suggest systematic dementia management.

Acceptability of a theory-based sedentary behaviour reduction intervention for older adults ('On Your Feet to Earn Your Seat').

BACKGROUND: Adults aged 60 years and over spend most time sedentary and are the least physically active of all age groups. This early-phase study explored acceptability of a theory-based intervention to reduce sitting time and increase activity in older adults, as part of the intervention development process. METHODS: An 8-week uncontrolled trial was run among two independent samples of UK adults aged 60-75 years. Sample 1, recruited from sheltered housing on the assumption that they were sedentary and insufficiently active, participated between December 2013 and March 2014. Sample 2, recruited through community and faith centres and a newsletter, on the basis of self-reported inactivity (<150 weekly minutes of moderate-to-vigorous activity) and sedentary behaviour (≥ 6 h mean daily sitting), participated between March and August 2014. Participants received a booklet offering 16 tips for displacing sitting with light-intensity activity and forming activity habits, and self-monitoring 'tick-sheets'. At baseline, 4-week, and 8-week follow-ups, quantitative measures were taken of physical activity, sedentary behaviour, and habit. At 8 weeks, tick-sheets were collected and a semi-structured interview conducted. Acceptability was assessed for each sample separately, through attrition and adherence to tips, ANOVAs for behaviour and habit changes, and, for both samples combined, thematic analysis of interviews. RESULTS: In Sample 1, 12 of 16 intervention recipients completed the study (25% attrition), mean adherence was 40% (per-tip range: 15-61%), and there were no clear patterns of changes in sedentary or physical activity behaviour or habit. In Sample 2, 23 of 27 intervention recipients completed (15% attrition), and mean adherence was 58% (per-tip range: 39-82%). Sample 2 decreased mean sitting time and sitting habit, and increased walking, moderate activity, and activity habit. Qualitative data indicated that both samples viewed the intervention positively, found the tips easy to follow, and reported health and wellbeing gains. CONCLUSIONS: Low attrition, moderate adherence, and favourability in both samples, and positive changes in Sample 2, indicate the intervention was acceptable. Higher attrition, lower adherence, and no apparent behavioural impact among Sample 1 could perhaps be attributable to seasonal influences. The intervention has been refined to address emergent acceptability problems. An exploratory controlled trial is underway.

The effect of exercise on behavioural and psychological symptoms of dementia: the EVIDEM-E randomised controlled clinical trial.

OBJECTIVE: The objective of this study is to evaluate the effectiveness of a simple dyadic (person with dementia and their main carer) exercise regimen as a therapy for the behavioural and psychological symptoms of dementia. METHOD: A two arm, pragmatic, randomised, controlled, single-blind, parallel-group trial of a dyadic exercise regimen (individually tailored walking regimen designed to become progressively intensive and last between 20-30 min, at least five times per week).Community-dwelling individuals with ICD-10 confirmed dementia with the following: clinically significant behavioural and psychological symptoms, a carer willing and able to co-participate in the exercise regimen, and no physical conditions or symptoms that would preclude exercise participation were invited by mental health or primary care services into the study. RESULTS: One hundred and thirty-one dyads were recruited to this study. There was no significant difference in Behavioural and Psychological Symptoms as measured by the Neuropsychiatric Inventory at week 12 between the group receiving the dyadic exercise regimen and those that did not (adjusted difference in means (intervention minus control) = -1.53, p = 0.6, 95% CI [-7.37, 4.32]). There was a significant between-group difference in caregiver's burden as measured by the Zarit Caregiver Burden Inventory at week 12 (OR = 0.18, p = 0.01, CI [0.05, 0.69]) favouring the exercise group. CONCLUSIONS: This study found that regular simple exercise does not appear to improve the behavioural and psychological symptoms of dementia, but did seem to attenuate caregiver burden. Further study to improve exercise uptake are needed.

Religious/spiritual coping resources and their relationship with adjustment in patients newly diagnosed with breast cancer in the UK.

BACKGROUND: Religious/spiritual resources may serve multiple functions in adjustment to cancer. However, there is very little evidence of the importance of religious/spiritual variables outside the USA. This paper reports the cross-sectional data of a longitudinal study examining the beneficial and harmful effects of religious/spiritual coping resources on adjustment in the first year after a breast cancer diagnosis. METHOD: One hundred and fifty-five patients newly diagnosed with breast cancer were assessed after surgery. Several aspects of religiousness/spirituality in relation to anxiety and depression were examined: religiosity/spirituality, strength of faith, belief in God, private and public practices, spiritual involvement, perceived spiritual support and positive and negative religious coping strategies. Non-religious coping, social support and optimism were also assessed. RESULTS: 'Feeling punished and abandoned by God' significantly explained 5% of the variance in increased levels of anxiety but was partially mediated by denial coping. It was also partially mediated by acceptance coping, lowering levels of anxiety. Feeling punished and abandoned by God was a significant independent predictor of depressed mood, explaining 4% of the variance. CONCLUSION: Using religious/spiritual resources in the coping process during the early stages of breast cancer may play an important role in the adjustment process in patients with breast cancer. Patients may benefit from having their spiritual needs addressed as experiencing some form of religious/spiritual struggle may serve as a barrier to illness adjustment. Implications for research and clinical practices are discussed.

Palliative assessment and advance care planning in severe dementia: an exploratory randomized controlled trial of a complex intervention.

Patients with advanced dementia often receive poor end-of-life care. We aimed to design and pilot a palliative care and advance care plan (ACP) intervention. Patients had undergone emergency hospital admission and had severe dementia. The intervention consisted of a palliative care patient assessment which informed an ACP discussion with the carer, who was offered the opportunity to write an ACP for the person with dementia. Carer-patient dyads were randomized to 'usual care' or the intervention. Carer-related outcome measures included the Kessler Distress Scale, Decision Satisfaction Inventory, Client Satisfaction Questionnaire and the Euroqol-5D, measured at baseline, six weeks, six months and three months after bereavement. The Satisfaction with End of Life Care in Dementia Scale was completed if the patient died. The 32 patient participants were physically frail and in the advanced stages of dementia: 62% had pressure damage to the skin, all needed feeding assistance and 95% were in pain. Nearly 50% died during the six-month follow-up period. Carers were difficult to recruit during acute admission; 33 patients and carers entered the study (22 intervention arm; 11 control arm). Only seven carers made ACPs. The care planning discussion was well received, but few carers wrote an ACP, despite intensive support from an experienced nurse specialist. Advance care planning is, in theory, a necessary intervention for people with severe dementia; the reluctance of carers to write plans needs to be explored further.

Palliative care in advanced dementia; A mixed methods approach for the development of a complex intervention.

BACKGROUND: There is increasing interest in improving the quality of care that patients with advanced dementia receive when they are dying. Our understanding of the palliative care needs of these patients and the natural history of advanced disease is limited. Many people with advanced dementia have unplanned emergency admissions to the acute hospital; this is a critical event: half will die within 6 months. These patients have complex needs but often lack capacity to express their wishes. Often carers are expected to make decisions. Advance care planning discussions are rarely performed, despite potential benefits such more consistent supportive healthcare, a reduction in emergency admissions to the acute hospital and better resolution of carer bereavement. DESIGN/METHODS: We have used the MRC complex interventions framework, a "bottom-up" methodology, to develop an intervention for patients with advanced dementia and their carers aiming to 1) define end of life care needs for both patients and carers, 2) pilot a palliative care intervention and 3) produce a framework for advance care planning for patients.The results of qualitative phase 1 work, which involved interviews with carers, hospital and primary care staff from a range of disciplines, have been used to identify key barriers and challenges. For the exploratory trial, 40 patients will be recruited to each of the control and intervention groups. The intervention will be delivered by a nurse specialist. We shall investigate and develop methodology for a phase 3 randomised controlled trial. For example we shall explore the feasibility of randomisation, how best to optimise recruitment, decide on appropriate outcomes and obtain data for power calculations. We will evaluate whether the intervention is pragmatic, feasible and deliverable on acute hospital wards and test model fidelity and its acceptability to carers, patients and staff. DISCUSSION: Results of qualitative phase 1 work suggested that carers and staff were keen to discuss these issues and guided the development of the intervention and choice of outcomes. This will be vital in moving to a phase III trial that is pragmatic and feasible for these complex patients within the NHS. TRIAL REGISTRATION: ISRCTN03330837.

A comparison of service use by people with dementia in two samples a decade apart.

Investment in improving community-based dementia care is underway in the United Kingdom, but we do not know how well it meets the needs of people with dementia and those who care for them. The aim of this study was to explore the service use and reported unmet needs of people with dementia in two samples recruited a decade apart. We interviewed 122 carers from Central Scotland and London in 2000-2001 and 84 carers from South-East England in 2010-2011 using the same interview schedule. The two samples of carers had similar demographics. The later groups were more likely to be spouses, slightly older, not working, ethnically diverse, have better perceived health and better access to a car. The people with dementia in each sample had similar characteristics and levels of disability. Carers in the later sample reported more met need for activities of daily living, although up to a third were still not getting sufficient help with some activities. Nearly half of both samples reported verbal aggression and nearly a fifth physical aggression, yet most have not received advice on how to manage this. There is a more evident role of the practice nurse ( p = 0.01) and less evident use of community nurses ( p = 0.0005), psychiatric nurses ( p = 0.006) and health visitors ( p = 0.0003) in the more recent sample.

Explaining the effects of symptom attribution by carers on help-seeking for individuals living with dementia.

This study investigated the effects of carer attributions on help-seeking behaviour for people with dementia using interviews with 84 carers recruited through general practice. Memory loss was the most commonly reported first symptom but psychological and behavioural symptoms were also common at onset. In over a third of individuals help-seeking was delayed for a mean of 25 months (range 6-69, SD 19.3). Help-seeking between those who attributed symptoms to dementia, or to unknown causes, and those who attributed symptoms to personality, ageing, life events or other illnesses was statistically significant ( p < 0.001). No statistically significant associations between help-seeking and patient or carer characteristics were found. There is a need to raise public awareness about the range of symptoms suggestive of dementia. Assumptions that age and other conditions may be the likely cause of an individual's cognitive decline needs to be challenged by practitioners. Attribution of symptoms to characteristics other than dementia delays help-seeking.

Do religious/spiritual coping strategies affect illness adjustment in patients with cancer? A systematic review of the literature.

The present paper systematically reviews studies examining the potential beneficial or harmful effects of religious/spiritual coping with cancer. Using religion and spirituality as resources in coping may be specifically prevalent in patients with cancer considering the potentially life-threatening nature of the illness. Religious/spiritual coping may also serve multiple functions in long-term adjustment to cancer such as maintaining self-esteem, providing a sense of meaning and purpose, giving emotional comfort and providing a sense of hope. Seventeen papers met the inclusion criteria of which seven found some evidence for the beneficial effect of religious coping, but one of these also found religious coping to be detrimental in a sub-sample of their population. A further three studies found religious coping to be harmful and seven found non-significant results. However, many studies suffered from serious methodological problems, especially in the manner in which religious coping was conceptualised and measured. The studies also failed to control for possible influential variables such as stage of illness and perceived social support. Due to this, any firm conclusions about the possible beneficial or harmful effects of religious coping with cancer is lacking. These problems are discussed and suggestions for future studies are made.

The role of illness beliefs, treatment beliefs, and perceived severity of symptoms in explaining distress in cancer patients during chemotherapy treatment.

The authors investigated cancer patients' interpretations of their physical symptoms and their illness beliefs with the objective of establishing the importance of these variables in predicting distress during chemotherapy treatment. Past researchers have suggested that causal attributions of physical symptoms and beliefs about illness progression and its consequences may serve as important mediators between number and perceived severity of symptoms and psychological adjustment in cancer patients during the treatment phase. Our aim in this study was to further these findings using the Self-Regulation Model as a theoretical framework. The study was cross-sectional in design, testing 72 patients with cancer receiving intravenous chemotherapy as outpatients in the United Kingdom. The participants completed questionnaires measuring number and perceived severity of symptoms, the causal attributions of these, illness and treatment beliefs, anxiety, and depression. The results showed that consequence beliefs serve as important mediators between number of symptoms and distress, explaining 15% of the variance in anxious mood and 5% of the variance in depressed mood. The authors found perceived severity of symptoms to be an independent predictor of anxious mood, explaining 7% of the variance. Its role in predicting depressed mood was not significant.

'On Your Feet to Earn Your Seat', a habit-based intervention to reduce sedentary behaviour in older adults: study protocol for a randomized controlled trial.

BACKGROUND: Many older adults are both highly sedentary (that is, spend considerable amounts of time sitting) and physically inactive (that is, do little physical activity). This protocol describes an exploratory trial of a theory-based behaviour change intervention in the form of a booklet outlining simple activities ('tips') designed both to reduce sedentary behaviour and to increase physical activity in older adults. The intervention is based on the 'habit formation' model, which proposes that consistent repetition leads to behaviour becoming automatic, sustaining activity gains over time. METHODS: The intervention is being developed iteratively, in line with Medical Research Council complex intervention guidelines. Selection of activity tips was informed by semi-structured interviews and focus groups with older adults, and input from a multidisciplinary expert panel. An ongoing preliminary field test of acceptability among 25 older adults will inform further refinement. An exploratory randomized controlled trial will be conducted within a primary care setting, comparing the tips booklet with a control fact sheet. Retired, inactive and sedentary adults (n = 120) aged 60 to 74 years, with no physical impairments precluding light physical activity, will be recruited from general practices in north London, UK. The primary outcomes are recruitment and attrition rates. Secondary outcomes are changes in behaviour, habit, health and wellbeing over 12 weeks. DISCUSSION: Data will be used to inform study procedures for a future, larger-scale definitive randomized controlled trial. TRIAL REGISTRATION: Current Controlled Trials ISRCTN47901994.

Tailored educational intervention for primary care to improve the management of dementia: the EVIDEM-ED cluster randomized controlled trial.

BACKGROUND: Early diagnosis of dementia is important because this allows those with dementia and their families to engage support and plan ahead. However, dementia remains underdetected and suboptimally managed in general practice. Our objective was to test the effect of a workplace-based tailored educational intervention developed for general practice on the clinical management of people with dementia. METHODS: The tailored educational intervention was tested in an unblinded cluster randomized controlled trial with a pre/post-intervention design, with two arms: usual/normal care control versus educational intervention. The primary outcome measure was an increase in the proportion of patients with dementia who received at least two documented dementia-specific management reviews per year. Case identification was a secondary outcome measure. RESULTS: 23 practices in South-East England participated. A total of 1,072 patients with dementia (intervention: 512, control: 560) had information in their medical records showing the number of reviews within 12 months (or a proportion of) before intervention or randomization and within 12 months (or a proportion of) after. The mean total number of dementia management reviews after the educational intervention for people with dementia was 0.89 (SD 1.09; minimum 0; median 1; maximum 8) compared with 0.89 (SD 0.92; minimum 0; median 1; maximum 4) before intervention. In the control group prior to randomization the mean total number of dementia management reviews was 1.66 (SD 1.87; minimum 0; median 1; maximum 12) and in the period after randomization it was 1.56 (SD 1.79; minimum 0; median 1; maximum 11). Case detection rates were unaffected. The estimated incidence rate ratio for intervention versus control group was 1.03 (P = 0.927, 95% CI 0.57 to 1.86). CONCLUSIONS: The trial was timely, coinciding with financial incentives for dementia management in general practice (through the Quality Outcomes Framework); legal imperatives (in the form of the Mental Capacity Act 2005); policy pressure (The National Dementia Strategy 2009); and new resources (such as dementia advisors) that increased the salience of dementia for general practitioners. Despite this the intervention did not alter the documentation of clinical management of patients with dementia in volunteer practices, nor did it increase case identification. TRIAL REGISTRATION: NCT00866099/Clinical Trials.

Evidence-based interventions in dementia: A pragmatic cluster-randomised trial of an educational intervention to promote earlier recognition and response to dementia in primary care (EVIDEM-ED).

BACKGROUND: The National Dementia Strategy seeks to enhance general practitioners' diagnostic and management skills in dementia. Early diagnosis in dementia within primary care is important as this allows those with dementia and their family care networks to engage with support services and plan for the future. There is, however, evidence that dementia remains under-detected and sub-optimally managed in general practice. An earlier unblinded, cluster randomised controlled study tested the effectiveness of educational interventions in improving detection rates and management of dementia in primary care. In this original trial, a computer decision support system and practice-based educational workshops were effective in improving rates of detecting dementia although not in changing clinical management. The challenge therefore is to find methods of changing clinical management. Our aim in this new trial is to test a customised educational intervention developed for general practice, promoting both earlier diagnosis and concordance with management guidelines. DESIGN/METHOD: The customised educational intervention combines practice-based workshops and electronic support material. Its effectiveness will be tested in an unblinded cluster randomised controlled trial with a pre-post intervention design, with two arms; normal care versus the educational intervention. Twenty primary care practices have been recruited with the aim of gaining 200 patient participants. We will examine whether the intervention is effective, pragmatic and feasible within the primary care setting. Our primary outcome measure is an increase in the proportion of patients with dementia who receive at least two dementia-specific management reviews per year. We will also examine important secondary outcomes such as practice concordance with management guidelines and benefits to patients and carers in terms of quality of life and carer strain. DISCUSSION: The EVIDEM-ED trial builds on the earlier study but the intervention is different in that it is specifically customised to the educational needs of each practice. If this trial is successful it could have implications for the implementation of the National Dementia Strategy. TRIAL REGISTRATION: NCT00866099.