Despite practice development in the area of advanced care planning (ACP) and systems wide changes implemented to support ACP processes, there has been a paucity of research which has addressed the experiences of a key stakeholder group – family and carers – as they navigate their way through these often very challenging processes. The study described in this article focussed on this key group.

In-depth qualitative interviews were undertaken with family members and carers in a regional area of Australia in order to illuminate their lived experiences of ACP processes.

Thematic analysis of the narrative data yielded 4 key themes: Being overwhelmed on the ACP journey; unifying effects of completing and using an advanced care directive (ACD); experiencing the highlights and lowlights of care; and paying it forward in advice to staff, carers and families.

The ACP journey is unique for each carer/family and can be overwhelming. Whilst he lived experiences of families/carers indicated that the quality of care received was of a high standard, feedback to staff suggested their communications be timelier and more empathic. All participants in this study reported benefitting from engaging in ACP early and appreciated support to do so. All benefitted from the preparation of an ACD and found the outcomes (in terms of concordance) gratifying.

1. (1) The need to consider cultural influences to ensure relevance of interventions like cognitive behaviour therapy (CBT) or family interventions (FI) in different countries.

2. (2) The need for cultural adaptation of interventions like CBT and FI in different countries to make them accessible and acceptable.

3. (3) When adapting therapy to a particular culture or country, recognizing the importance of engaging the local cultural population in the adaptation process.

Portugal has a Dementia Strategy that endorses care coordination in the community, but the strategy is not implemented despite there being a network of multidisciplinary primary care clinics that could support it. Recent research into barriers to dementia management in primary care has focused essentially on general practitioners’ (GPs) factors and perspectives. A comprehensive triangulated view on the barriers to dementia management emphasising teamwork is missing.

To explore the barriers to the implementation of the Portuguese Dementia Strategy by primary care teams, from the perspectives of service users and professionals.

Purposive sampling was used to recruit 10 GPs, 8 practice nurses, 4 social workers, 8 people with dementia and 10 family carers from 6 practices in different social contexts within the Lisbon metropolitan area. The analytical framework combined codes derived from the transcripts with codes from the available literature. Themes focused on the access to professionals/community services, care coordination within healthcare teams, and between health and community services.

Several system barriers were identified (undefined roles/coordination within teams, time constraints, insufficient signposting to community services) along with individual barriers (limited competence in dementia, unrecognised autonomy, limited views on social health and quality of life (QoL)), hindering users access to dementia services.

Enhanced competence in dementia, and nurse-led systematic care of people with dementia and their carers, are necessary. They can be effective in improving the QoL in dementia, but only if associated with better community support.

Caring for a person with dementia is associated with poor mental, physical, and social health, which makes it important to consider how carers are best supported in their caring role to preserve both their and the person with dementia’s well-being. At present, a robust instrument to assess carers’ support needs does not exist. This study aimed to develop a self-reported questionnaire to assess the support needs of carers of people with dementia. The objectives were to: (1) generate items, (2) pilot test, and (3) field-test the questionnaire.

Development and field-testing of a new questionnaire.

Primary and secondary health and social care of informal carers and people with dementia in nine municipalities and one dementia clinic in a hospital in Denmark.

Eight experts, 12 carers, and 7 digital users participated in pilot testing. 301 carers participated in field-testing.

Items for inclusion were generated based on interviews and literature review. An iterative process of data collection was applied to establish face and content validity of the Dementia Carer Assessment of Support Needs Tool (DeCANT) using Content Validity Index among experts and cognitive interviews with carers. Field-testing of DeCANT among carers included using the 12-item Short Form Health Survey, the Barthel-20 Index, and the Neuropsychiatric Inventory.

Initially, an item pool of 63 items was generated, and pilot testing reduced this to 42 items. Subsequent field-testing resulted in a 25-item version of DeCANT, and confirmatory factor analysis of three hypothesized models demonstrated a marginally better fit to a four-factor model with fit indices of: χ2 = 775.170 (p < 0.001), root mean square error of approximation = 0.073, Comparative Fit Index = 0.946, the Tucker-Lewis Index = 0.938, and weighted root mean residual (WRMR) = 1.265.

DeCANT is a 25-item carer-reported questionnaire that can be used to help identify their support needs when caring for a person with dementia to enable supportive interventions and improve carers’ health and well-being.

Being a family caregiver, and in particular giving care to someone with dementia, impacts mental and physical health and potentially reduces the ability of caregivers to “live well.” This paper examines whether three key psychological resources—self-efficacy, optimism, and self-esteem—are associated with better outcomes for caregivers of people with dementia.

Caregivers of 1,283 people with mild-to-moderate dementia in the Improving the Experience of Dementia and Enhancing Active Life (IDEAL) project responded to measures of self-efficacy, optimism, and self-esteem, and “living well” (quality of life, life satisfaction, and well-being). Multivariate linear regression was used to examine the association between psychological resources and “living well”.

Self-efficacy, optimism, and self-esteem were all independently associated with better capability to “live well” for caregivers. This association persisted when accounting for a number of potential confounding variables (age group, sex, and hours of caregiving per day).

Low self-efficacy, optimism, and self-esteem might present a risk of poor outcomes for caregivers of people with dementia. These findings encourage us to consider how new or established interventions might increase the psychological resilience of caregivers.

Family education programs (FEPs) target caregiving-related psychological distress for carers of relatives/friends diagnosed with serious mental health conditions. While FEPs are efficacious in reducing distress, the mechanisms are not fully known. Peer group support and greater mental health knowledge are proposed to reduce carers' psychological distress by reducing stigmatising attitudes and self-blame, and strengthening carers' relationship with their relative.

Adult carers (n = 1016) who participated in Wellways Australia's FEP from 2009 to 2016 completed self-report questionnaires at the core program's start and end, during the consolidation period, and at a 6-month follow-up. Those who enrolled early completed questionnaires prior to a wait-list period. We used linear mixed-effects modelling to assess the program's effectiveness using a naturalistic wait-list control longitudinal design, and multivariate latent growth modelling to test a theory-based process change model.

While there was no significant change over the wait-list period, psychological distress, self-blame and stigmatising attitudes significantly decreased, and communication and relationship quality/feelings increased from the core program's start to its end. Changes were maintained throughout the consolidation period and follow-up. Peer group support significantly predicted the declining trajectory of distress. Peer group support and greater knowledge significantly predicted declining levels of self-blame and stigmatising attitudes, and increasing levels of communication.

This is the first study to quantitatively validate the mechanisms underlying the effect of FEPs on carers' psychological distress. Peer group support is key in modifying carers' appraisals of their friend/relatives' condition. Continued implementation of FEPs within mental health service systems is warranted.

Despite their key role in caring for individuals with serious, chronic illness, there have been no national studies examining family caregiver awareness and perceptions of palliative care. Hence, our objectives were to ascertain level of knowledge of palliative care among U.S. family caregivers and describe demographic variation in awareness and perceptions of palliative care.

Using the 2018 National Cancer Institute Health Information National Trends Survey, we identified unpaid family caregivers caring or making healthcare decisions for someone with a medical, behavioral, disability, or other condition. Respondents were asked about their awareness of the term “palliative care” and, if aware, how much they agreed with statements representing common (mis)perceptions about palliative care (e.g., “Palliative care is the same as hospice”).

More than one-half of caregivers (55%) had “never heard” of palliative care; 19.2% knew what palliative care was and “could explain it to someone else.” In adjusted models, racial minorities (vs. whites) and those without a college degree were less likely to have heard of palliative care. Among those aware of palliative care, ~40% “strongly” or “somewhat” agreed that “Palliative care is the same as hospice”; another 10.5% “didn't know.” Similarly, 40% reported that “When I think of palliative care, I automatically think of death.”

One-half of family caregivers of adults with serious chronic illness have never heard of palliative care. Even among those who had heard of palliative care, the majority do not distinguish it from hospice care and death. Given the role family caregivers may play in decisions to access palliative care, public messaging efforts are needed to clarify palliative care services in a way that is patient- and family-centered.

Improving quality of life (QOL) for people with dementia is a priority. In care homes, we often rely on proxy ratings from staff and family but we do not know if, or how, they differ in care homes.

We compared 1056 pairs of staff and family DEMQOL-Proxy ratings from 86 care homes across England. We explored factors associated with ratings quantitatively using multilevel modelling and, qualitatively, through thematic analysis of 12 staff and 12 relative interviews.

Staff and family ratings were weakly correlated (ρs = 0.35). Median staff scores were higher than family's (104 v. 101; p < 0.001). Family were more likely than staff to rate resident QOL as ‘Poor’ (χ2 = 55.91, p < 0.001). Staff and family rated QOL higher when residents had fewer neuropsychiatric symptoms and severe dementia. Staff rated QOL higher in homes with lower staff:resident ratios and when staff were native English speakers. Family rated QOL higher when the resident had spent longer living in the care home and was a native English. Spouses rated residents’ QOL higher than other relatives. Qualitative results suggest differences arise because staff felt good care provided high QOL but families compared the present to the past. Family judgements centre on loss and are complicated by decisions about care home placement and their understandings of dementia.

Proxy reports differ systematically between staff and family. Reports are influenced by the rater:staff and family may conceptualise QOL differently.

Prion diseases are rare dementias that most commonly occur sporadically, but can be inherited or acquired, and for which there is no cure. We sought to understand which prion disease symptoms are most problematic for carers, to inform the development of outcome measures.

Self-completed questionnaire with follow-up of a subset of participants by structured interview.

A nested study in the UK National Prion Monitoring Cohort, a longitudinal observational study.

71 carers, of people with different prion diseases with a wide range of disease severity, identified 236 of their four most problematic symptoms by questionnaire which were grouped into ten domains. Structured interviews were then done to qualitatively explore these experiences. Eleven family carers of people with prion disease were selected, including those representative of a range of demographics and disease subtypes and those who cared for people with prion disease, living or recently deceased. Interviews were transcribed and formally studied.

The six most problematic symptom domains were: mobility and coordination; mood and behavior; personal care and continence; eating and swallowing; communication; and cognition and memory. The prevalence of these symptoms varied significantly by disease stage and type. A formal analysis of structured interviews to explore these domains is reported.

We make suggestions about how healthcare professionals can focus their support for people with prion disease. Clinical trials that aim to generate evidence regarding therapies that might confer meaningful benefits to carers should consider including outcome measures that monitor the symptomatic domains we have identified as problematic.

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.