Symptom-led staging for primary progressive aphasia.

The primary progressive aphasias (PPA) present complex and diverse challenges of diagnosis, management and prognosis. A clinically-informed, syndromic staging system for PPA would take a substantial step toward meeting these challenges. This study addressed this need using detailed, multi-domain mixed-methods symptom surveys of people with lived experience in a large international PPA cohort. We administered structured online surveys to caregivers of patients with a canonical PPA syndromic variant (nonfluent/agrammatic (nvPPA), semantic (svPPA) or logopenic (lvPPA)). In an 'exploratory' survey, a putative list and ordering of verbal communication and nonverbal functioning (nonverbal thinking, conduct and wellbeing, physical) symptoms was administered to 118 caregiver members of the UK national PPA Support Group. Based on feedback, we expanded the symptom list and created six provisional clinical stages for each PPA subtype. In a 'consolidation' survey, these stages were presented to 110 caregiver members of UK and Australian PPA Support Groups, and refined based on quantitative and qualitative feedback. Symptoms were retained if rated as 'present' by a majority (at least 50%) of respondents representing that PPA syndrome, and assigned to a consolidated stage based on majority consensus; the confidence of assignment was estimated for each symptom as the proportion of respondents in agreement with the final staging for that symptom. Qualitative responses were analysed using framework analysis. For each PPA syndrome, six stages ranging from 1 ('Very mild') to 6 ('Profound') were identified; earliest stages were distinguished by syndromic hallmark symptoms of communication dysfunction, with increasing trans-syndromic convergence and dependency for basic activities of daily living at later stages. Spelling errors, hearing changes and nonverbal behavioural features were reported at early stages in all syndromes. As the illness evolved, swallowing and mobility problems were reported earlier in nfvPPA than other syndromes, while difficulty recognising familiar people and household items characterised svPPA and visuospatial symptoms were more prominent in lvPPA. Overall confidence of symptom staging was higher for svPPA than other syndromes. Across syndromes, functional milestones were identified as key deficits that predict the sequence of major daily life impacts and associated management needs. Qualitatively, we identified five major themes encompassing 15 subthemes capturing respondents' experiences of PPA and suggestions for staging implementation. This work introduces a prototypical, symptom-led staging scheme for canonical PPA syndromes: the PPA Progression Planning Aid (PPA 2 ). Our findings have implications for diagnostic and care pathway guidelines, trial design and personalised prognosis and treatment for people living with these diseases.

The Feasibility of a Mindfulness Intervention for Depression in People with Mild Dementia: A Pilot Randomized Controlled Trial.

OBJECTIVES: This preliminary study aimed to establish the feasibility of running an adapted Mindfulness Based Cognitive Therapy (MBCT) intervention for people with mild dementia and depression. It also aimed to conduct an exploratory analysis as to whether the MBCT intervention would lead to greater improvements in measures of depression, anxiety, quality of life and cognition, as compared to treatment as usual (TAU). METHODS: A single-blind, multisite, feasibility randomized controlled trial was used. People with dementia and depression were recruited from participating memory services. Twenty participants were randomized to either an adapted MBCT and TAU group (n = 10) or TAU (n = 10). Measures of depression, anxiety, quality of life (QOL), and cognition were assessed at baseline and follow-up. RESULTS: The intervention was feasible in terms of high attendance and low levels of attrition. It was not judged feasible to recruit enough participants within the recruitment time-frame. The MBCT group did not show significant improvements in depression, anxiety, QOL, and cognition at follow-up, as compared to TAU. CONCLUSION: There is currently inadequate evidence to recommend this adapted MBCT intervention for people with dementia for the treatment of depression within memory services. The MBCT intervention needs redevelopment and piloting before further testing in an RCT.

A systematic literature review of group-based training interventions for informal carers: impact on the behavioural and psychological symptoms of dementia (BPSD).

OBJECTIVES: Caring for a relative with dementia can be extremely challenging especially when someone presents with behavioural and psychological symptoms of dementia (BPSD). The training provided to informal carers is varied and inconsistent. Group-based training programmes are often prescribed but their impact on care-recipient wellbeing and symptomology is yet to be well established. This review synthesises the literature on consensus, themes and effectiveness of informal-carer, group-based educational training programmes on BPSD symptoms. METHODS: Ten papers were included of which very few considered BPSD outcomes as their primary aim of investigation. RESULTS: Methodological and theoretical approaches across the empirical papers varied considerably. Generally, studies of higher quality and with some positive results on BPSD outcomes tended to incorporate teaching on structured problem-solving skills. Studies measuring for longer term changes also tended to conclude more beneficial outcomes. The length and duration of groups and the group-sizes appeared inconsequential to BPSD outcomes. CONCLUSION: The empirical evidence is weak for carer group interventions in the management of BPSD. Practice reasons for this are discussed. Future studies designed to measure BPSD as a primary outcome would be a welcome addition to the literature.

Associations between psychological intervention for anxiety disorders and risk of dementia: a prospective cohort study using national health-care records data in England.

BACKGROUND: Meta-analyses support an association between anxiety in older adulthood and dementia. The aim of this study was to use routinely collected health data to test whether treatment of anxiety disorders through psychological intervention is associated with a lower incidence of dementia. METHODS: In this prospective cohort study, data from nationally provided psychological therapy services in England termed Improving Access to Psychological Therapies from 2012 to 2019 were linked to medical records, including dementia diagnoses as defined by the tenth edition of the International Classification of Diseases, up to 8 follow-up years later. Inclusion criteria were as follows: (1) patients who were aged 65 years and older; (2) patients with a probable anxiety disorder; and (3) those with no previous or current diagnosis of dementia. Cox proportional hazards models were constructed to test whether reliable improvement in anxiety following psychological intervention was associated with future dementia incidence. The primary outcome was all-cause dementia and cases were identified using ICD-10 dementia codes from Hospital Episode Statistics, Mental Health Services Dataset, and mortality data. For main analyses, hazards ratios (HRs) are presented. FINDINGS: Data from 128 077 people aged 65 years and older attending a nationally provided psychological intervention service in England were linked to medical records. 88 019 (69·0%) of 127 064 participants with available gender data were women and 39 585 (31·0%) were men. 111 225 (95·9%) of 115 989 with available ethnicity data were of White ethnicity. The mean age of the sample was 71·55 years (SD 5·69). Fully adjusted models included data from 111 958 people after 16 119 were excluded due to missing data on key variables or covariates. 4510 (4·0%) of 111 958 participants had a dementia diagnosis. The remaining 107 448 (96·0%) were censored either at date of death or when the final follow-up period available for analyses was reached. People who showed reliable improvement in anxiety had lower rates of later dementia diagnosis (3·9%) than those who did not show reliable improvement (5·1%). Reliable improvement in anxiety following psychological intervention was associated with reduced incidence of all-cause dementia (HR 0·83 [95% CI 0·78-0·88]), Alzheimer's disease (HR 0·85 [0·77-0·94]), and vascular dementia (HR 0·80 [0·71-0·90]). Effects did not differ depending on anxiety disorder diagnosis. INTERPRETATION: Results showed that reliable improvement in anxiety from psychological therapy was associated with reduced incidence of future dementia. There are multiple plausible explanations for this finding and further research is needed to distinguish between these possibilities. Missing data in the sample limit reliability of findings. FUNDING: Alzheimer's Society, Medical Research Council, Wellcome Trust, and UCLH National Institute for Health and Care Research Biomedical Research Centre.

Associations between psychological therapy outcomes for depression and incidence of dementia.

BACKGROUND: Depression is an important, potentially modifiable dementia risk factor. However, it is not known whether effective treatment of depression through psychological therapies is associated with reduced dementia incidence. The aim of this study was to investigate associations between reduction in depressive symptoms following psychological therapy and the subsequent incidence of dementia. METHODS: National psychological therapy data were linked with hospital records of dementia diagnosis for 119808 people aged 65+. Participants received a course of psychological therapy treatment in Improving Access to Psychological Therapies (IAPT) services between 2012 and 2019. Cox proportional hazards models were run to test associations between improvement in depression following psychological therapy and incidence of dementia diagnosis up to eight years later. RESULTS: Improvements in depression following treatment were associated with reduced rates of dementia diagnosis up to 8 years later (HR = 0.88, 95% CI 0.83-0.94), after adjustment for key covariates. Strongest effects were observed for vascular dementia (HR = 0.86, 95% CI 0.77-0.97) compared with Alzheimer's disease (HR = 0.91, 95% CI 0.83-1.00). CONCLUSIONS: Reliable improvement in depression across psychological therapy was associated with reduced incidence of future dementia. Results are consistent with at least two possibilities. Firstly, psychological interventions to improve symptoms of depression may have the potential to contribute to dementia risk reduction efforts. Secondly, psychological therapies may be less effective in people with underlying dementia pathology or they may be more likely to drop out of therapy (reverse causality). Tackling the under-representation of older people in psychological therapies and optimizing therapy outcomes is an important goal for future research.

Salivary cortisol in longitudinal associations between affective symptoms and midlife cognitive function: A British birth cohort study.

Affective disorders are associated with accelerated cognitive ageing. However, current understanding of biological mechanisms which underlie these observed associations is limited. The aim of this study was to test: 1) Whether cortisol acts as a pathway in the association between depressive or anxiety symptoms across adulthood and midlife cognitive function; 2) Whether cortisol is associated with later depressive or anxiety symptoms, and cognitive function. Data were used from the National Child Development Study (NCDS), a sample of infants born in mainland UK during one week of 1958. A measure of the accumulation of affective symptoms was derived from data collected from age 23 to 42 using the Malaise Inventory Scale. Salivary cortisol measures were available at age 44-45. Cognitive function (memory, fluency, information processing) and affective symptoms were assessed at the age of 50. Path models were run to test whether salivary cortisol explained the longitudinal association between depressive or anxiety disorder symptoms and cognitive function. Direct effects of affective symptoms are shown across early to middle adulthood on cognitive function in midlife (memory and information processing errors). However, there were no effects of affective symptoms on cognitive function through cortisol measures. Additionally, cortisol measures were not significantly associated with subsequent affective symptoms or cognitive function at the age of 50. These results do not provide clear evidence to suggest that cortisol plays a role in the association between affective symptoms and cognitive function over this period of time. These findings contribute to our understanding of how the association between affective symptoms and cognitive function operates over time.

Mindfulness-based cognitive therapy for depression in people with dementia: A qualitative study on participant, carer and facilitator experiences.

BACKGROUND: Depression in dementia is common and associated with negative health outcomes. Mindfulness-based cognitive therapy is a recommended treatment of choice for recurrent depression, but its use for depression in dementia is yet to be assessed. OBJECTIVE: This study aimed to investigate the experiences of people with depression and dementia who participated in the mindfulness-based cognitive therapy intervention and those of their carers and facilitators. METHODS: This qualitative study was nested within a randomised controlled feasibility study. Semi-structured interviews were conducted with 18 people (eight people with dementia and depression, six carers and four course facilitators). Thematic analysis was used to analyse the data. FINDINGS: Several beneficial effects of mindfulness-based cognitive therapy were described. These were a sense of shared suffering among the group, greater present moment focus and awareness, various positive emotional changes, including greater self-compassion, and benefits for carers, such as the reduction of anxiety. Specific aspects of the programme were identified as particularly useful, including facilitator characteristics and certain mindfulness practices. Carer involvement, cognitive difficulties and barriers to home practice influenced engagement with the course. Facilitators described adaptations made to mindfulness-based cognitive therapy and suggested additional modifications for future groups. CONCLUSION: Results of this process evaluation suggest that mindfulness-based cognitive therapy is a potentially useful intervention for people with depression in dementia, but that further adaptation of the intervention is required to make the programme suitable for this clinical population.

Childhood reading problems and cognitive ageing across mid to later life.

BACKGROUND: Little research has investigated long-term associations of childhood reading with cognitive ageing. The aim of this study was to test longitudinal associations between childhood reading problems and cognitive function from mid-adulthood (age 43) to early old age (age 69), and whether associations were mediated by education. METHODS: Data were from the MRC National Survey of Health and Development, a prospective population-based birth cohort. Reading problems were measured at age 11 using a reading test. Verbal memory and processing speed were measured at ages 43, 53, 60-64 and 69 and Addenbrooke's Cognitive Examination (ACE) was administered at age 69. Linear mixed models and path analyses were used to test: (1) associations between reading problems and verbal memory and processing speed trajectories; (2) associations between reading problems and ACE-III scores; (3) whether associations were mediated by education. RESULTS: Reading problems were associated with poorer verbal memory at intercept but not rate of decline (N=1726), and were not associated with processing speed intercept or decline (N=1730). There were higher rates of scores below ACE-III clinical thresholds (<82 and <88) in people with reading problems compared with those without. Reading problems were associated with poorer total ACE-III scores and all domain scores at age 69 (N=1699). Associations were partly mediated by education. CONCLUSION: Reading problems in childhood were associated with poorer cognitive function in early old age, and associations were partly mediated by education.

Associations between childhood reading problems and affective symptoms across the life course: Evidence from the 1946 British Birth Cohort.

BACKGROUND: Little is known about long-term outcomes of reading problems in childhood on affective symptoms across the life course. The aim of this research was to test longitudinal associations between reading problems in childhood and affective symptoms from adolescence to early old age. METHODS: Data were from the National Survey of Health and Development (British 1946 birth cohort). A measure of reading problems was available at age 11. Affective symptoms were assessed at ages 13, 15, 35, 43, 53, 60-64 and 69. Path analyses tested longitudinal associations between reading problems and affective symptoms from adolescence to early old age. Linear regressions tested associations between reading problems in childhood and accumulation of affective symptoms across the life course (age 13 to 69). Models were adjusted for sex, education, conduct problems, and socioeconomic position in childhood and adulthood. RESULTS: After full adjustment, reading problems were significantly associated with higher affective symptoms in adolescence (ages 13 and 15) but not affective symptoms in adulthood (ages 36, 43, 53, 60-64, and 69). Reading problems were not associated with accumulation of affective symptoms across the life course. LIMITATIONS: Attrition was limitation of this study, due to the long follow-up period. In order to account for missing data, full information maximum likelihood (FIML) was used. CONCLUSIONS: Childhood reading problems are associated with higher affective symptoms in adolescence, but this does not persist into adulthood. These results highlight an important period in adolescence when reading problems may exert a particularly strong effect on affective symptoms.

Meta-analysis of psychosocial interventions for people with dementia and anxiety or depression.

Objectives: Assess the effectiveness of psychosocial interventions for depression and anxiety in people with dementia (PWD) or mild cognitive impairment (MCI). Method: OvidMedline, PsychInfo and Embase were searched for studies on the 5th August 2017. The efficacy of the studies was estimated using meta-analyses. Results: Eight RCTs were included. No RCTs were identified for people with MCI. Four RCTs found that psychosocial interventions (multicomponent intervention, Tai Chi, problem adaptation therapy and exercise/walking) were effective at reducing symptoms of depression in PWD who were depressed. One study (Tai Chi) found that these reductions were no longer evident at six-month follow-up. Another study, not included in the meta-analyses, found that pleasant events behaviour therapy and problem solving behaviour therapy improved depression symptoms and this effect remained significant at follow-up. Three RCTs found that psychosocial interventions (music therapy and cognitive behavioural therapy (CBT)) reduced symptoms of anxiety in PWD who were anxious. Evidence from two of these RCTs (music therapy and CBT) showed that these improvements were evident at three to six-month follow-up. Conclusion: The identified psychosocial interventions are effective at reducing symptoms of depression or anxiety in PWD experiencing these symptoms. This review is limited by the quality of studies, small sample sizes and the heterogeneity of the interventions, therefore high quality studies with larger sample sizes are required to test the efficacy of specific interventions such as CBT.

Mindfulness-Based Cognitive Therapy (MBCT) programme for depression in people with early stages of dementia: study protocol for a randomised controlled feasibility study.

BACKGROUND: Depression and dementia are major public health problems in the UK. Depression in early-stage dementia is very common and significantly reduces quality of life, speeds cognitive decline and increases functional impairment. Mindfulness-Based Cognitive Therapy (MBCT) is an effective depression prevention programme, and the National Institute for Clinical Excellence (NICE) has suggested that MBCT is a priority for implementation. Alongside this, there is emerging evidence demonstrating promising results in relation to the benefits of adapted mindfulness interventions for people with dementia, suggesting that it could be beneficial in reducing depressive symptoms and in slowing deterioration in cognitive functions such as sustained attention, distraction inhibition and task switching. METHODS: The design is a single-blind randomised controlled feasibility trial. Participants with mild to moderate depression and early stages of dementia will be recruited from the participating memory services. Participants will receive either immediate or delayed access to an 8-week MBCT programme. Participants will be assessed by a blind assessor and complete cognitive and mood-related outcome measures before and after the intervention. This feasibility study will test the trial design and assess recruitment, retention, acceptability and adherence, as well as providing preliminary efficacy data. DISCUSSION: This study will inform the design and sample size for a future full randomised controlled trial (RCT), which will be carried out to determine the effectiveness of the intervention in reducing depressive symptoms in people with early stages of dementia. TRIAL REGISTRATION: ClinicalTrials.gov ISRCTN16382776.

Effectiveness of weekly cognitive stimulation therapy for people with dementia and the additional impact of enhancing cognitive stimulation therapy with a carer training program.

PURPOSE OF THE STUDY: Cognitive stimulation therapy (CST) is a widely used, evidence-based intervention for people with dementia (PwD). Although designed as a 14 session, twice weekly intervention, many services in the UK deliver CST once a week for 14 weeks. However, this method of delivery has yet to be evaluated. In addition, CST does not include any formal carer training. This study aimed to evaluate the effectiveness of once weekly CST and determine any additional impact when enhanced with a carer training program. DESIGN AND METHODS: A single blind, randomized controlled trial was conducted. Sixty eight PwD and their carers were recruited through three community Memory Assessment Services. PwD and their carers were randomized to one of three conditions: CST plus carer training, CST only, or a wait list control. PwD were administered standardized measures of cognition, quality of life, and quality of relationship with carer at baseline and the 15 week follow-up. RESULTS: There were no baseline differences across the three groups. At follow-up, there were no significant differences between PwD in the three groups on any outcomes. IMPLICATIONS: Weekly CST with or without carer training may not be an effective form of delivery. Several possible explanations for the outcomes are proposed. Weekly CST may not offer the necessary "dose" required to combat decline, and equally the carer training may have been too brief to have made a difference. Services currently offering weekly CST should collect routine outcome data to support its use and provide practice-based evidence.

Effectiveness of computer-mediated interventions for informal carers of people with dementia-a systematic review.

BACKGROUND: Caring for a friend or relative with dementia can be burdensome and stressful, and puts carers at increased risk of physical and psychological problems. A number of psychosocial interventions, some delivered by computer, have been developed to support carers. This review evaluates the outcomes of computer-mediated interventions. METHODS: PsychINFO, MEDLINE, and CINAHL Plus were searched for papers published between January 2000 and September 2012. Study quality was evaluated using a modified version of Downs and Black's (1998) checklist. RESULTS: Fourteen empirical studies, evaluating a range of complex, multifaceted interventions, met inclusion criteria. The most commonly measured variables were carer burden/stress and depression. In general, higher quality studies found that interventions did have an effect on these variables. Two higher quality studies also found that anxiety was reduced following intervention. Most studies found that positive aspects of caring were increased through these interventions, as was carer self-efficacy. There were mixed results in relation to social support, and physical aspects of caring did not seem to be affected. Program impact measures indicated general acceptability of these interventions. CONCLUSIONS: The findings support the provision of computer-mediated interventions for carers of people with dementia. Future studies would benefit from design improvements, such as articulating clearly defined aims, having a control group, having adequate statistical power, and measuring a greater range of factors important to carers themselves.

The effectiveness of an Internet support forum for carers of people with dementia: a pre-post cohort study.

BACKGROUND: The well-being of informal carers of people with dementia is an important public health issue. Caring for an elderly relative with dementia may be burdensome and stressful, and can negatively affect the carer's social, family, and professional life. The combination of loss, the physical demands of caregiving, prolonged distress, and biological vulnerabilities of older carers may compromise their physical health, increase social isolation, and increase the risk of anxiety and depressive disorders. Caregiver stress is also linked to negative outcomes for the recipient of care and costs to society, including increased nursing home and hospital admissions. Consequently, carer support interventions are an important component of dementia care. Computer-mediated carer support offers a range of potential advantages compared to traditional face-to-face support groups, including accessibility and the possibility of tailoring to meet individual needs, but there has been little research on its effectiveness so far. OBJECTIVE: This mixed-methods study examined the impact of a well-respected UK-based online support forum for carers of people with dementia. METHODS: A total of 61 new forum users completed measures of anxiety (7-item Generalized Anxiety Disorder scale, GAD-7), depression (9-item Patient Health Questionnaire, PHQ-9), and quality of relationship with the person with dementia (Scale for the Quality of the Current Relationship in Caregiving, SQCRC), at baseline and again after 12 weeks of forum usage, within a pre-post design. In addition, 8 participants were interviewed about their experiences with using the forum. RESULTS: There was an improvement in the quality of the relationship with the person with dementia (SQCRC: P=.003). There was no change in users' depression (PHQ-9) or anxiety (GAD-7) over the 12-week study period. Interview participants reported a range of positive experiences and benefits from using the forum. Limited negative experiences were also reported. CONCLUSIONS: Many of the reported experiences and benefits are unique to online peer support. Further research into online peer support for carers of people with dementia is needed to clarify who benefits under what conditions.