A shift toward public health responses to dementia, raises questions about the most appropriate approaches to specific population groups. We examined perspective and age as elements in effective campaigning. Implications from the standpoint of the recipient are drawn for public health education and practice.

In-depth semi-structured face-to-face and telephone interview with self-selected participants recruited via adverts, contact with provider organizations and cards placed in retail and service settings. Questions focused on attitudes to dementia and expectations of public campaigning and education.

Community-dwelling adults were interviewed across five Australian states.

A total of 111 people from 5 target groups: people with dementia (n = 19), carers (n = 28), care work and service professionals from healthcare (n = 21), social work (n = 23) and commercial service professions (n = 20) involving people in younger adulthood (n = 13), early midlife (n = 23), later midlife (n = 54), and older age (n = 21).

All interviews were transcribed and analyzed thematically by three researchers, reaching consensus before coding and further analysis in NVivo. Narrative analysis of transcripts included 330 topics relating to 6 main areas of focus.

Attitudes and views on effective future campaigning reflected a desire for greater social inclusion, but did not focus on prevention and health services. Professionals focused on increasing interpersonal skills, people with dementia on normalization, and carers on awareness-raising.

Public health campaigning and education in relation to dementia, could benefit from closer consideration of perspective and age of recipient in intervention design. Interpersonal skills and social inclusion were identified as key issues.

To identify, review, and critically appraise model-based economic evaluations of all types of interventions for people with dementia and their carers.

A systematic literature search was undertaken to identify model-based evaluations of dementia interventions. A critical appraisal of included studies was carried out using guidance on good practice methods for decision-analytic models in health technology assessment, with a focus on model structure, data, and model consistency.

Interventions for people with dementia and their carers, across prevention, diagnostic, treatment, and disease management.

We identified 67 studies, with 43 evaluating pharmacological products, 19 covering prevention or diagnostic strategies, and 5 studies reporting non-pharmacological interventions. The majority of studies use Markov models with a simple structure to represent dementia symptoms and disease progression. Half of all studies reported taking a societal perspective, with the other half adopting a third-party payer perspective. Most studies follow good practices in modeling, particularly related to the decision problem description, perspective, model structure, and data inputs. Many studies perform poorly in areas related to the reporting of pre-modeling analyses, justifying data inputs, evaluating data quality, considering alternative modeling options, validating models, and assessing uncertainty.

There is a growing literature on the model-based evaluations of interventions for dementia. The literature predominantly reports on pharmaceutical interventions for Alzheimer's disease, but there is a growing literature for dementia prevention and non-pharmacological interventions. Our findings demonstrate that decision-makers need to critically appraise and understand the model-based evaluations and their limitations to ensure they are used, interpreted, and applied appropriately.

To study longitudinal changes in the quality of life (QoL) in persons with and without dementia, and explore the factors associated with baseline QoL and changes of QoL over the follow-up period.

Prospective longitudinal study.

Data were collected from 17 municipalities in Norway in the period from January 2009 to August 2012. A total of 412 persons were included, 254 (61.7 %) persons without dementia and 158 (38.3 %) with dementia at baseline.

Persons 70 years of age or older, receiving municipal care services. Main outcome measures include the following: self-rated and proxy-rated QoL over a period of 18 months, cognitive status, functional status, neuropsychiatric symptoms, and demographics.

Longitudinal changes in QoL were small, despite changes in clinical variables. Proxy ratings of patients QoL were lower than the patients’ own ratings. Belonging to a group with low QoL trajectory was associated with symptoms of depression, reduced physical and instrumental functioning, and more severe dementia.

Patients and proxies evaluated the patients’ QoL differently and QoL did not necessarily correspond with deterioration in clinical parameters. To prevent impaired QoL, we need to address identified factors and keep an approach open to the individual perceptions of QoL.

The care of community-dwelling people with dementia often occurs in the context of pre-existing family relationships. The presence of dementia can result in changes to the quality of those relationships. The purpose of this systematic review is to identify factors that enhance or challenge the quality of spousal or offspring relationships in the context of dementia.

Both qualitative and quantitative studies were included in a systematic review of the literature. Thematic analysis of results was conducted that examined factors related to the relationship quality of community dwelling people with dementia and their spousal or offspring carer. Meta-analysis was not possible due to the heterogeneity of the included studies.

Four themes were extracted from seven qualitative studies: connection to the carer role; identity of the people with dementia; current efforts to maintain relationship connection; and the dyads response to dementia. Each of these four themes incorporated positive and negative facets that impacted on relationship quality. An analysis of nine quantitative and one mixed methods studies identified four domains: influence of dementia characteristics; connection within the dyad; relationship response to stress and carer burden; and carer demographic factors.

The findings of this review highlight relationship factors that are important for supporting relationship quality for the people with dementia and the carer individually, as well as for the dyad together. These findings extend an existing framework of relationship quality in dementia. Implications for interventions to enhance relationship quality in the dementia context are discussed.

Recent research has demonstrated the challenges to self-identity associated with dementia, and the importance of maintaining involvement in decision-making while adjusting to changes in role and lifestyle. This study aimed to understand the lived experiences of couples living with dementia, with respect to healthcare, lifestyle, and “everyday” decision-making.

Semi-structured qualitative interviews using Interpretative Phenomenological Analysis as the methodological approach.

Community and residential care settings in Australia.

Twenty eight participants who self-identified as being in a close and continuing relationship (N = 13 people with dementia, N = 15 spouse partners). Nine couples were interviewed together.

Participants described a spectrum of decision-making approaches (independent, joint, supported, and substituted), with these approaches often intertwining in everyday life. Couples’ approaches to decision-making were influenced by “decisional,” “individual,” “relational,” and “external” factors. The overarching themes of “knowing and being known,” “maintaining and re-defining couplehood” and “relational decision-making,” are used to interpret these experiences. The spousal relationship provided an important context for decision-making, with couples expressing a history and ongoing preference for joint decision-making, as an integral part of their experience of couplehood. However, the progressive impairments associated with dementia presented challenges to maintaining joint decision-making and mutuality in the relationship.

This study illustrates relational perspectives on decision-making in couples with dementia. Post-diagnostic support, education resources, proactive dyadic interventions, and assistance for spouse care partners may facilitate more productive attempts at joint decision-making by couples living with dementia.

There is limited evidence regarding how the decision evolves about whether and when it is best for a person with dementia to move to a care home. The factors leading to the timing of the decision remain particularly unclear. This systematic review of existing literature aims to gain an understanding of the decision-making timing and process to distinguish the drivers of these decisions, and to identify if there is an “optimal” or best time (if any) for a person with dementia to move to a care home.

Six English language electronic databases were searched up to the end of 2016, along with included papers’ reference lists. Papers were screened against the inclusion criteria and rated for quality. Extracted data were thematically analyzed.

The review identified 16 relevant papers. Seven themes were identified: (1) what happened before the move; (2) planning for the move, (3) weighing up the decision, (4) lack of support, (5) drivers of the decision, (6) emotional significance of the move, and (7) continued reflection on the decision. “Time” of the move was largely absent from much of the literature, although inferences were made. Overall, the decision-making process appeared to be cyclic, with family carers constantly re-evaluating when might be the time to make the move with some continuing to reflect on this even subsequently.

Further research is required to understand the “optimal” or best time (if any) for when a person with dementia moves to a care home, and how to determine when someone is ready to move.

Caring for persons with dementia (PWD) can create “caregiver burden,” which is associated with negative outcomes for caregivers and PWD. The ZBI (Zarit Burden Interview) is a widely used unitary measure of caregiver burden. However, recent research has found caregiver burden to be multi-dimensional. The purpose of this study was to explore the factor structure of the ZBI within a sample of UK caregivers. A secondary aim was to identify variables that predicted burden dimensions found.

A total of 110 unpaid community caregivers of PWD completed the ZBI. They also completed the EACQ (Experiential Avoidance in Caregiving Questionnaire), DEX (Dysexecutive Questionnaire), PACS (Positive Aspects of Caregiving Scale), and a demographic questionnaire. ZBI data were analyzed via exploratory factor analysis (principal axis factoring). Relationships between burden factors and other variables were studied using Pearson correlations and multiple regression.

Analysis identified three burden factors, namely direct impact of caregiving, uncertainty around the future, and frustration/embarrassment. A direct impact of caregiving and frustration/embarrassment has been found previously. Uncertainty over the future is a new factor, which was predicted by adult-child caregiver role, highlighting that spouses and adult children are likely to have different burden experiences. Additionally, uncertainty over the future and frustration/embarrassment were inversely predicted by PACS, suggesting that being mindful of positive aspects of caregiving may function as a protective factor for burden.

This study found caregiver burden to be multi-dimensional and uncovered a novel factor in uncertainty over the future, which warrants further exploration. Burden factors were associated with a range of modifiable variables that could be targeted within health and social care interventions to improve outcomes for caregivers and PWD.

The aim of this study was to update the literature on interventions for carers of people with dementia published between 2006 and 2016 and evaluate the efficacy of psychoeducational programs and psychotherapeutic interventions on key mental health outcomes (depression, anxiety, burden, and quality of life).

A meta-analysis was carried out of randomized controlled trials of carer interventions using MEDLINE, PsycINFO, Scopus, and Cochrane Central Register of Controlled Trials.

The majority of studies were conducted in Western and Southern Europe or the United States and recruited carers of people with Alzheimer's disease or dementia grouped as a whole. The most commonly used outcome measures were depression and burden across studies. The updated evidence suggested that psychoeducation-skill building interventions delivered face-to-face can better impact on burden. Psychotherapeutic interventions underpinned by Cognitive Behavior Therapy (CBT) models demonstrated strong empirical support for treating anxiety and depression and these effects were not affected by the mode of delivery (i.e. face-to-face vs. technology). A modern CBT approach, Acceptance and Commitment Therapy (ACT), seemed to be particularly beneficial for carers experiencing high levels of anxiety.

Future research needs to explore the efficacy of interventions on multiple clinical outcomes and which combination of interventions (components) would have the most significant effects when using CBT. The generalization of treatment effects in different countries and carers of different types of dementia also need to be addressed. More research is needed to test the efficacy of modern forms of CBT, such as ACT.

Caring for persons with dementia is stressful for family caregivers. Caregiver training programs and respite care can reduce this stress and help maintain persons with dementia living longer in the community. We evaluated a program that combines caregiver training with a residential respite stay.

In total, 90 dyads of persons with dementia and their caregivers, in groups of 3–6 dyads, volunteered to participate in a five-day residential training program and were followed-up 6 and 12 months later. The primary outcome was caregiver depression; secondary outcomes were measures of caregiver burden, unmet needs, person with dementia behavioral symptoms, and the quality of life and function.

Caregiver depression and burden were unchanged, despite decreasing function in persons with dementia. Caregivers’ unmet needs and behavioral symptoms in persons with dementia decreased significantly. Compared to a group of persons with dementia admitted for routine residential respite care, there was a marked reduction in permanent placement over 12 months.

The Going to Stay at Home Program is a feasible and practicable model with benefits for caregivers and persons with dementia. It may lead to delay in institutionalization and may be applicable to other chronic conditions.

Evaluate the clinical outcomes for patients with dementia, delirium, or at risk for delirium supported by the person-centered volunteer program in rural acute hospitals.

A non-randomized, controlled trial.

Older adults admitted to seven acute hospitals in rural Australia. Intervention (n = 270) patients were >65 years with a diagnosis of dementia or delirium or had risk factors for delirium and received volunteer services. Control (n = 188) patients were admitted to the same hospital 12 months prior to the volunteer program and would have met eligibility criteria for the volunteer program, had it existed.

Trained volunteers provided 1:1 person-centered care with a focus on nutrition and hydration support, hearing and visual aids, activities, and orientation.

Medical record audits provided data on volunteer visits, diagnoses, length of stay (LOS), behavioral incidents, readmission, specialling, mortality, admission to residential care, falls, pressure ulcers, and medication use.

Across all sites, there was a significant reduction in rates of 1:1 specialling and 28 day readmission for patients receiving the volunteer intervention. LOS was significantly shorter for the control group. There were no differences in other patient outcomes for the intervention and control groups.

The volunteer intervention is a safe, effective, and replicable way to support older acute patients with dementia, delirium, or risk factors for delirium in rural hospitals. Further papers will report on cost effectiveness, family carer, volunteer, and staff experiences of the program.

The “pathway to care” concept offers a helpful framework for preparing national dementia plans and strategies and provides a structure to explore the availability and accessibility of timely and effective care for people with dementia and support for their informal carers. Within the framework of the JPND-MEETINGDEM implementation project the pathways to regular day-care activities and the Meeting Centers Support Programme (MCSP), an innovative combined support form for people with dementia and carers, was explored.

An exploratory, descriptive, qualitative, cross-country design was applied to investigate the pathways to day care in several regions in four European countries (Italy, Poland, United Kingdom, and the Netherlands).

Before implementation of MCSP, of the four countries the United Kingdom had the most structured pathway to post-diagnostic support for people with dementia. MCSP introduction had a positive impact on the pathways to day-care activities in all countries. MCSP filled an important gap in post-diagnostic care, increasing the accessibility to support for both people with dementia and carers. Key elements such as program of activities, target group, and collaboration between healthcare and social services were recognized as success factors.

This study shows that MCSP fills (part of) the gap between diagnosis and residential care and can therefore be seen as a pillar of post-diagnostic care and support. Further dissemination of Meeting Centers in Europe may have a multiple impact on the structure of dementia services in European countries and the pathways to day care for people with dementia and their carer(s).