Health care technologies
Guidance
Better research using high-quality study designs is needed to develop, implement and evaluate complex palliative care interventions (targeting whole-system change) for people with dementia living and dying at home.
Explanation
Our systematic review found that the existing evidence base remains insufficient and is generally too weak to robustly assess the effects of palliative care interventions for people with dementia living at home.
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Guidance
Evaluations of the effectiveness of internet training programs should explore mechanisms of change and aspects of the intervention design, such as reliability, the type of device used and modality of the intervention.
Explanation and example
The systematic review (Egan et al 2018) of internet training support for familiy carers lacks detail about potential factors which may influence the effectiveness of online programs (i.e. type of connectivity, development of the intervention, usability, etc.). The quality of individual studies selected for the systematic review was limited as more than 50% of the studies showed incomplete data reporting, and 25% showed a selective reporting of outcomes according to the risk of bias assessment performed making the generalization of the results difficult. However, the systematic review reported improvements on carer’s mental health outcomes by internet training.
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Guidance
Internet training programmes for family carers have potential to increase carers’ well-being, to reduce distress, depression and anxiety symptoms and to increase knowledge skills.
Explanation and example
A systematic review (Egan et al. 2018) about online training programmes for family carers reported on two studies in which improvements in depression symptoms were demonstrated, two studies with overall improvements in anxiety and two studies showing reduction of stress symptoms. Good examples of informative websites and internet training programmes for family carers are ‘Mastery over Dementia’, iSupport, ‘iCARE: Stress management eTraining programme’ and the STAR E-Learning course.
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Guidance
Analyses of the moderation effect of demographic characteristic of the carers and other characteristics of the person with dementia on the internet training programs outcomes should be encouraged.
Explanation and example
Several studies have been done to find moderators of effects of online training programs for carers of people with dementia. Some studies have demonstrated that some programs were more effective for certain subgroups of carers. However, in our analyses we could not replicate these findings. Our analyses on the effect of age, gender, level of education, relationship with the person with dementia, functional status of the person with dementia and frequency of appearance of challenging behaviour suggests that the program is equally effective for all the subgroups analysed. More research is needed before we have definitive answers. A better understanding of moderators of carers’ training programs could lead to better tailoring of programs based on the specific characteristic of the carer.
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Guidance
When evaluating adherence of people with dementia to a computer-based cognitive rehabilitation program, sociodemographic, cognitive, and psychological factors should be taken into account.
Explanation and example
When we consider evaluating the adherence of people with dementia to a computer-based program for cognitive rehabilitation, it is important to consider sociodemographic (age, sex, educational level), cognitive (memory, attention, executive function) and psychological factors (level of motivation, expectations, previous computer use).
For this purpose, a periodic evaluation will help to evaluate these factors and their relation to the amount and the time that a person spends in using a computer program for cognitive rehabilitation. In this way, significant modifications could be made to the program, so that the program meets the needs of people with dementia.
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