Predeath grief conceptualizes complex feelings of loss experienced for someone who is still living and is linked to poor emotional well-being. The Road Less Travelled program aimed to help carers of people with rarer dementias identify and process predeath grief. This study evaluated the feasibility, acceptability, and preliminary effectiveness of this program.

Pre–post interventional mixed methods study.

Online videoconference group program for carers across the UK held in 2021.

Nine family carers of someone living with a rare form of dementia. Eight were female and one male (mean age 58) with two facilitators.

The Road Less Travelled is an online, facilitated, group-based program that aims to help carers of people with rarer dementias to explore and accept feelings of grief and loss. It involved six fortnightly 2-hour sessions.

We collected measures for a range of well-being outcomes at baseline (T1), post-intervention (T2), and 3 months post-intervention (T3). We conducted interviews with participants and facilitators at T2.

Participant attendance was 98% across all sessions. Findings from the semistructured interviews supported the acceptability of the program and identified improvements in carer well-being. Trends in the outcome measures suggested an improvement in quality of life and a reduction in depression.

The program was feasible to conduct and acceptable to participants. Qualitative reports and high attendance suggest perceived benefits to carers, including increased acceptance of grief, and support the need for a larger-scale pilot study to determine effectiveness.

Grief research in family carers of people with dementia has increased. We aimed to report the prevalence of pre-death and post-death grief and to synthesize associated factors and the relationship between pre-death factors and post-death grief and services used to manage grief.

(Prospero protocol: CRD42020165071) We systematically reviewed literature from PsycINFO, MEDLINE, CINAHL, and ASSIA until April 2020. Effectiveness of intervention data and studies not written in English were excluded; qualitative studies were additionally excluded during study selection. Study quality was assessed using the Mixed Methods Appraisal Tool. Evidence was narratively summarized.

Family non-paid carers of somebody with any dementia type.

Validated measures of pre-death and/or post-death grief.

We included quantitative data from 55 studies (44 rated as high quality). Most included solely spouse or adult child carers. Forty-one studies reported pre-death grief, 12 post-death grief, and 6 service use; eight were longitudinal. 17% met the Prolonged Grief Disorder criteria pre-death (n = 1) and 6–26% (n = 4) of participants met the Complicated Grief criteria post-death. Being a spouse, less educated, caring for somebody with advanced dementia, and greater burden and depression were associated with higher pre-death grief. Lower education level and depression were predictive of higher post-death grief. Pre-death factors found to influence post-death grief were grief and depression. Limited service use evidence was reported.

Awareness of characteristics which increase the likelihood of higher grief can help identify those in need of support. Future research should focus on what supports or services are beneficial to grief experiences.

To develop a staff training intervention for agitation in people with severe dementia, reaching end-of-life, residing in nursing homes (NHs), test feasibility, acceptability, and whether a trial is warranted.

Feasibility study with pre- and post-intervention data collection, qualitative interviews, and focus groups.

Three NHs in South East England with dementia units, diverse in terms of size, ownership status, and location.

Residents with a dementia diagnosis or scoring ≥2 on the Noticeable Problems Checklist, rated as “severe” on Clinical Dementia Rating Scale, family carers, and staff (healthcare assistants and nurses).

Manualized training, delivered by nonclinical psychology graduates focusing on agitation in severe dementia, underpinned by a palliative care framework.

Main outcomes were feasibility of recruitment, data collection, follow-up, and intervention acceptability. We collected resident, family carer, and staff demographics. Staff provided data on resident’s agitation, pain, quality of life, and service receipt. Staff reported their sense of competence in dementia care. Family carers reported on satisfaction with end-of-life care. In qualitative interviews, we explored staff and family carers’ views on the intervention.

The target three NHs participated: 28 (49%) residents, 53 (74%) staff, and 11 (85%) family carers who were eligible to participate consented. Eight-four percent of staff attended ≥3 sessions, and we achieved 93% follow-up. We were able to complete quantitative interviews. Staff and family carers reported the intervention and delivery were acceptable and helpful.

The intervention was feasible and acceptable indicating a larger trial for effectiveness may be warranted.

Family caregivers of people with dementia can experience loss and grief before death. We hypothesized that modifiable factors indicating preparation for end of life are associated with lower pre-death grief in caregivers.

Cross-sectional.

Caregivers of people with dementia living at home or in a care home.

In total, 150 caregivers, 77% female, mean age 63.0 (SD = 12.1). Participants cared for people with mild (25%), moderate (43%), or severe dementia (32%).

Primary outcome: Marwit-Meuser Caregiver Grief Inventory Short Form (MMCGI-SF). We included five factors reflecting preparation for end of life: (1) knowledge of dementia, (2) social support, (3) feeling supported by healthcare providers, (4) formalized end of life documents, and (5) end-of-life discussions with the person with dementia. We used multiple regression to assess associations between pre-death grief and preparation for end of life while controlling for confounders. We repeated this analysis with MMCGI-SF subscales (“personal sacrifice burden”; “heartfelt sadness”; “worry and felt isolation”).

Only one hypothesized factor (reduced social support) was strongly associated with higher grief intensity along with the confounders of female gender, spouse, or adult child relationship type and reduced relationship closeness. In exploratory analyses of MMCGI-SF subscales, one additional hypothesized factor was statistically significant; higher dementia knowledge was associated with lower “heartfelt sadness.”

We found limited support for our hypothesis. Future research may benefit from exploring strategies for enhancing caregivers’ social support and networks as well as the effectiveness of educational interventions about the progression of dementia (ClinicalTrials.gov ID: NCT03332979).

While videoconferencing, telementoring, and peer support have been shown to enhance services in some instances, there has been no research investigating the use of these technologies in supporting professionals managing clients with dementia. The objective of this research was to evaluate expansion of an old age psychiatry consultation service and pilot test a model to improve medical supervision and clinical governance for staff within regional and remote areas using remote information technology.

The design was a mixed methods (qualitative and quantitative) evaluation using before, mid-point and post-implementation semi-structured interviews and questionnaires to examine orientation, acceptance, and impact underpinned by theoretical approaches to evaluation. Education evaluations used a Likert style response template. Participants were 18 dementia service staff, including staff from linked services and old age psychiatrists. Qualitative interviews addressed the pilot implementation including: expectations, experiences, strategies for improving the pilot, and perceived impact on work practice and professional development opportunities.

There was high satisfaction with the program. The case conference process contributed to perceived improved outcomes for clients, family, and staff. Clinicians perceived improvement in family carer and staff carer stress and their confidence in managing clients with behavioral and psychological symptoms of dementia (BPSD). Thematic analysis indicated that the pilot enhanced professional development, decreased travel time, and improved team cohesion.

Given the increasing aging population in regional, rural, and remote areas, initiatives using videoconferencing and telementoring will help to develop a confident and skilled workforce. This pilot program was found to be acceptable and feasible. Potential benefits for clients and family carers should be examined in future resesarch.

Attitudes to aging have been investigated in non-carer populations and found to have important relationships with physical and mental health. However, these have not been explored in an older carer sample, although it is becoming increasingly important to clarify variables which are linked with positive carer outcomes. This is one of the first studies to report on older carers, their attitudes to aging, and the relationship with carer-related factors.

A cross-sectional study of 202 carers with a mean age of 70.8 years was conducted in Victoria, Australia, using carer demographic data, carer factors such as depression (using the Geriatric Depression Scale), burden (using the Zarit Burden Inventory, ZBI), physical health, personality, and attitudes to aging (using the Attitudes to Aging Questionnaire, AAQ). Spearman rank correlation and hierarchical regression analyses were used.

This study showed that carers had overall positive attitudes to aging inspite of their caring role. It also identified that carer factors including depression and burden contributed a significant amount of the variance to attitudes to aging in terms of physical change and psychosocial loss. Personality traits, specifically neuroticism, and extraversion, were also important contributors to attitudes to aging.

Results from this study demonstrated that inspite of moderate levels of depression and spending significant time caring, carers reported positive attitudes to aging. Treating depression, decreasing burden, and investigating the benefits of caring may assist older carers maintain their well-being.