BackgroundThere has been a substantial number of systematic reviews of stress, coping and interventions for people with dementia and their caregivers. This paper provides a meta-review of this literature 1988-2014.MethodA meta-review was carried out of systematic reviews of stress, coping and interventions for people with dementia and their caregivers, using SCOPUS, Google Scholar and CINAHL Plus databases and manual searches.ResultsThe meta-review identified 45 systematic reviews, of which 15 were meta-analyses. Thirty one reviews addressed the effects of interventions and 14 addressed the results of correlational studies of factors associated with stress and coping. Of the 31 systematic reviews dealing with intervention studies, 22 focused on caregivers, 6 focused on people with dementia and 3 addressed both groups. Overall, benefits in terms of psychological measures of mental health and depression were generally found for the use of problem focused coping strategies and acceptance and social-emotional support coping strategies. Poor outcomes were associated with wishful thinking, denial, and avoidance coping strategies. The interventions addressed in the systematic reviews were extremely varied and encompassed Psychosocial, Psychoeducational, Technical, Therapy, Support Groups and Multicomponent interventions. Specific outcome measures used in the primary sources covered by the systematic reviews were also extremely varied but could be grouped into three dimensions, viz., a broad dimension of “Psychological Well-Being v. Psychological Morbidity” and two narrower dimensions of “Knowledge and Coping” and of “Institutionalisation Delay”.ConclusionsThis meta-review supports the conclusion that being a caregiver for people with dementia is associated with psychological stress and physical ill-health. Benefits in terms of mental health and depression were generally found for caregiver coping strategies involving problem focus, acceptance and social-emotional support. Negative outcomes for caregivers were associated with wishful thinking, denial and avoidance coping strategies. Psychosocial and Psychoeducational interventions were beneficial for caregivers and for people with dementia. Support groups, Multicomponent interventions and Joint Engagements by both caregivers and people with dementia were generally found to be beneficial. It was notable that virtually all reviews addressed very general coping strategies for stress broadly considered, rather than in terms of specific remedies for specific sources of stress. Investigation of specific stressors and remedies would seem to be a useful area for future research.Electronic supplementary materialThe online version of this article (doi:10.1186/s12877-016-0280-8) contains supplementary material, which is available to authorized users.

Difficulty with everyday activities is a key symptom and defining feature of dementia, relating to subjective reports of well-being and overall quality of life. One way to support individuals in their daily activities is by modifying the physical environment to make it easier to interact with during activity performance. This systematic review explores the range of studies available using physical environmental strategies to support performance in everyday activities for people with dementia. Seventy-two relevant studies were identified by the search. Physical environmental strategies included changes to the global environment and to architectural features, use of moveable environmental aids and tailored individual approaches. Strategies supported general everyday activity functioning (N = 19), as well as specific activities, particularly mealtimes (N = 15) and orientation in space (N = 16); however, few studies were found that focused on aspects of personal care such as dressing (N = 1) and showering or the preferred hobbies of individuals (N = 0). Overall, there appeared to be a lack of research within private home environments, and of studies which specify the dementia syndrome or the whole neuropsychological profile of people with dementia. More work is needed to extend theoretical understandings of how people with dementia interact with their environments so that these spaces can be designed to further support activities of daily living performance. Future work in this field could also incorporate the perspectives and preferences of those living with dementia.

ObjectivesTo explore the stress process for individuals living with posterior cortical atrophy (PCA) and their families.DesignA qualitative study using in-depth semi-structured dyadic and individual interviews with people living with a diagnosis of PCA and a family carer. Interview transcripts were thematically analysed.SettingParticipants’ homes.Participants20 individuals in the mild to moderate stages of PCA and 20 family carers.FindingsThree major themes were identified: (1) the diagnostic journey: mostly an unsettling and convoluted process, owing to the early age of onset, rarity and atypical symptom profile of PCA. (2) Interactions with the physical environment: profound difficulties with functional and leisure activities were usually compensated for with adaptations maximising familiarity or simplicity. (3) Implications within the psychosocial environment: symptoms impacted individuals’ sense of independence and identity and required reallocations of roles and responsibilities. Ongoing uncertainties and the progressive nature of PCA caused most dyads to take a ‘one day at a time’ approach to coping. Relatively well-preserved insight and memory were a benefit and burden, as individuals shared the illness experience with family members and also compared their current situation to pre-diagnosis. The experience was framed by background and contextual factors and understood within an ever-changing temporal context.ConclusionThe stress process in PCA is characterised by uncertainty and unpredictability from diagnosis through to ongoing management. The provision of tailored information about cortical visual problems and associated functional difficulties, time-sensitive environmental adaptations to help those with PCA to identify what and where things are and psychosocial interventions for the marital/family unit as a whole would be useful to improve both functional status and psychological well-being. Future research exploring (1) stress and coping in the later stages of PCA and (2) the nature and impact of visual impairment(s) in typical Alzheimer’s disease would be worthwhile.

Temporal variations in loneliness at the individual and population level have long been reported in longitudinal studies. Although the evidence is limited due to methodological distinctions among studies, we broadly know that loneliness as one ages is a dynamic experience with people becoming more or less lonely or staying the same over time. There is, however, less evidence to understand individual variations in loneliness over shorter periods of time. This paper reports on one element of a small mixed method pilot study to investigate seasonal variations in loneliness over the course of one year and to test the effectiveness of tools used to collect data at repeated short intervals. Our findings confirm that loneliness is dynamic even over shorter periods of time with participants reporting to be lonelier in the evenings, weekends and spring-summer period. Data measures were at times problematic due to language and/or interpretation and reinforce the relevance of reviewing the more common approaches to studying loneliness to more effectively capture the complex and individual nature of the experience.

It has been highlighted that health and social care staff need a greater awareness of the needs and problems of those people with young onset dementia in the UK. Symptoms of Alzheimer's disease are relatively well known (memory loss, disorientation, language difficulties and behavioural problems). However, there is less awareness of dementia‐related visual processing impairments in Alzheimer's disease, Dementia with Lewy Bodies or rarer dementia syndromes such as posterior cortical atrophy (PCA), leading to delayed assessment, diagnosis and management. This qualitative study explored health and social care practitioners’ opinions of the needs of people with dementia‐related visual processing impairment (such as individuals with PCA) and identify any training that these practitioners might need. Social workers, occupational therapists, care home staff, rehabilitation workers (visual impairment), optometrists and admiral nurses participated in focus groups or one‐to‐one semi‐structured interviews. All participants were shown video clips of people with dementia‐related visual impairment to facilitate discussion. Sixty‐one participants took part in focus groups or interviews between November 2014 and December 2015. Participants’ experiences and understanding of dementia were explored and thematic analysis of the data identified two major themes. Theme 1 explores participants’ understanding of dementia‐related visual impairments. Theme 2 recounts how participants address and support people with dementia‐related visual impairment and their families. Participants discussed, reflected and critically analysed the video clips during data collection. Most considered new perspectives of their own clients’ difficulties and those participants working with people with rarer dementias consolidated their experiences. However, some participants seemed hesitant to accept the existence of visual processing impairment arising due to dementia, rationalising novel information to existing understanding of memory loss or behavioural problems. This study highlights that health and social care practitioners want more training and better understanding of less well‐recognised symptoms of dementia and rarer syndromes (including PCA) to ensure appropriate, evidence‐based assessment and intervention.