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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.
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).
Behaviour that challenges in people with intellectual disability is associated with higher healthcare, social care and societal costs. Although behavioural therapies are widely used, there is limited evidence regarding the cost and quality-adjusted life-years (QALYs).
We aimed to assess the incremental cost per QALY gained of therapist training in positive behaviour support (PBS) and treatment as usual (TAU) compared with TAU using data from a cluster randomised controlled trial (Clinical Trials.gov registration: NCT01680276).
We conducted a cost-utility analysis (cost per QALY gained) of 23 teams randomised to PBS or TAU, with a total of 246 participants followed up over 36 months. The primary analysis was from a healthcare cost perspective with a secondary analysis from a societal cost perspective.
Over 36 months the intervention resulted in an additional 0.175 QALYs (discounted and adjusted 95% CI −0.068 to 0.418). The total cost of training in and delivery of PBS is £1598 per participant plus an additional cost of healthcare of £399 (discounted and adjusted 95% CI −603 to 1724). From a healthcare cost perspective there is an 85% probability that the intervention is cost-effective compared with TAU at a £30 000 willingness to pay for a QALY threshold.
There was a high probability that training in PBS is cost-effective as the cost of training and delivery of PBS is balanced out by modest improvements in quality of life. However, staff training in PBS is not supported given we found no evidence for clinical effectiveness.
We aimed to critically evaluate decision aids developed for practitioners and caregivers when providing care for someone with dementia or for use by people with dementia themselves. Decision aids may be videos, booklets, or web-based tools that explicitly state the decision, provide information about the decision, and summarize options along with associated benefits and harms. This helps guide the decision maker through clarifying the values they place on the benefits or harms of the options.
We conducted a systematic review of peer-reviewed literature in electronic databases (CINAHL, The Cochrane Library, EMBASE, MEDLINE, and PsychINFO) in March 2018. Reference lists were searched for relevant papers and citations tracked. Data were synthesized with meta-analysis and narrative synthesis. Papers were included if they met the following criteria: 1) the focus of the paper was on the evaluation of a decision aid; 2) the decision aid was used in dementia care; and 3) the decision aid was aimed at professionals, people with dementia, or caregivers.
We identified 3618 studies, and 10 studies were included, covering three topics across six decision aids: 1) support with eating/feeding options, 2) place of care, and 3) goals of care. The mode of delivery and format of the decision aids varied and included paper-based, video-based, and audio-based decision aids. The decision aids were shown to be effective, increasing knowledge and the quality of communication. The meta-analysis demonstrated that decisions are effective in reducing decisional conflict among caregivers (standardized mean difference = −0.50, 95% confidence interval [ − 0.97, − 0.02]).
Decision aids offer a promising approach for providing support for decision-making in dementia care. People are often faced with more than one decision, and decisions are often interrelated. The decision aids identified in this review focus on single topics. There is a need for decision aids that cover multiple topics in one aid to reflect this complexity and better support caregivers.
Staff training in positive behaviour support (PBS) is a widespread treatment approach for challenging behaviour in adults with intellectual disability.
To evaluate whether such training is clinically effective in reducing challenging behaviour during routine care (trial registration: NCT01680276).
We carried out a multicentre, cluster randomised controlled trial involving 23 community intellectual disability services in England, randomly allocated to manual-assisted staff training in PBS (n = 11) or treatment as usual (TAU, n = 12). Data were collected from 246 adult participants.
No treatment effects were found for the primary outcome (challenging behaviour over 12 months, adjusted mean difference = −2.14, 95% CI: −8.79, 4.51) or secondary outcomes.
Staff training in PBS, as applied in this study, did not reduce challenging behaviour. Further research should tackle implementation issues and endeavour to identify other interventions that can reduce challenging behaviour.
There are concerns about the quality of care that people with dementia receive in the general hospital. Staff report a lack of confidence and inadequate training in dementia care.
A train-the-trainer model was implemented across eight acute hospital trusts in London via a large academic health and science network. Impact was evaluated using mixed methods. Data were collected at (a) individual level: “Sense of Competence in Dementia Care” (SCID), (b) ward level: Person Interaction and Environment (PIE) observations, (c) organization level: use of specific tools, i.e. “This Is Me,” (d) systems level: numbers and types of staff trained per trust. Results were analyzed with descriptive statistics and paired t-test with thematic framework analysis for PIE observations.
The number of staff trained per trust ranged from 67 to 650 (total 2,020). A total of 1,688 (85%) baseline questionnaires and 456 (27%) three month follow-up questionnaires were completed. Mean SCID score was 43.2 at baseline and 50.7 at follow-up (paired t-test, p < 0.001). All sub-scales showed a small increase in competence, the largest being for “building relationships.” Organizational level data suggested increased use of carer's passport, “This Is Me” documentation, dementia information leaflets, delirium screening scales, and pathways. PIE observations demonstrated improved staff–patient interactions but little change in hospital environments.
There was a significant improvement in staffs’ sense of competence in dementia care and the quality of interactions with patients. More hospitals adopted person-centered tools and pathways. Work is required to investigate if these changes improve hospital outcomes for people with dementia.
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