There is a wealth of literature investigating the role of family involvement within care homes following placement of a relative with dementia. This review summarises how family involvement is measured and aims to address two questions: (1) which interventions concerning family involvement have been evaluated? And (2) does family involvement within care homes have a positive effect on a resident’s quality of life and behavioural and psychological symptoms of dementia? After searching and screening on the three major databases PsycINFO, MEDLINE and CINAHL Plus for papers published between January 2005 and May 2021, 22 papers were included for synthesis and appraisal due to their relevance to family involvement interventions and or family involvement with resident outcomes. Results show that in 11 interventions designed to enhance at least one type of family involvement, most found positive changes in communication and family–staff relationships. Improvement in resident behavioural and psychological symptoms of dementia was reported in two randomised controlled trials promoting partnership. Visit frequency was associated with a reduction of behavioural and psychological symptoms of dementia for residents with moderate dementia. Family involvement was related to positive quality of life benefits for residents. Contrasting results and methodological weaknesses in some studies made definitive conclusions difficult. Few interventions to specifically promote family involvement within care homes following placement of a relative with dementia have been evaluated. Many proposals for further research made over a decade ago by Gaugler (2005) have yet to be extensively pursued. Uncertainty remains about how best to facilitate an optimum level and type of family involvement to ensure significant quality of life and behavioural and psychological symptoms of dementia benefits for residents with dementia.
This feasibility and pilot study aimed to develop and field-test a 14-session virtual Cognitive Stimulation Therapy (vCST) programme for people living with dementia, developed as a result of services moving online during the COVID-19 pandemic. Methods: The vCST protocol was developed using the existing group CST manual, through stakeholder consultation with people living with dementia, caregivers, CST group facilitators and dementia service managers. This protocol was then field-tested with 10 groups of people living with dementia in the Brazil, China (Hong Kong), India, Ireland and the UK, and feedback on the protocol was gathered from 14 facilitators. Results: Field testing in five countries indicated acceptability to group facilitators and participants. Feedback from these groups was used to refine the developed protocol. The final vCST protocol is proposed, including session materials for delivery of CST over videoconferencing and a framework for offering CST virtually in global settings. Conclusion: vCST is a feasible online intervention for many people living with dementia. We recommend that it is offered to those unable to access traditional in-person CST for health reasons, lack of transport or COVID-19 restrictions. Further research is needed to explore if participant outcomes are comparable to in-person CST groups.
Background Knowledge of and attitudes towards dementia vary across countries, and for caregivers in low- and middle-income countries (LMICs), access to information can be challenging. There is an urgent need for brief, easily accessible and culturally appropriate educational courses for caregivers of persons with dementia, providing much needed information whilst addressing important psychological concepts such as stigma. Methods An international and multidisciplinary team developed Dementia Awareness for Caregivers (DAC) courses in four stages: (1) scoping review and module agreement, (2) development of an International template (DAC-International) containing a standardised process for adding information, (3) development of local DACs using a standardised format and (4) acceptability of courses in Brazil, India and Tanzania. Findings The DAC-International was developed, comprising three modules: ‘What is dementia?’; ‘Positive engagement’ and ‘Caring for someone with dementia’. Three local versions were developed from this (DAC-Brazil, DAC-India and DAC-Tanzania), where additions of country-specific information included prevalent stereotypes and the addition of culturally relevant case studies. An initial field test was conducted in each country ( n = 85), which indicated acceptability to participants. Conclusions The methods used here resulted in culturally valid and acceptable educational courses for carers of people with dementia. Future work will consist of large-scale, formal evaluations and the development of additional local courses.
Access to psychosocial interventions for people with dementia, such as Cognitive Stimulation Therapy (CST), has been restricted during the COVID-19 pandemic. Some services have shifted to provision via videoconferencing, but the prevalence of this is unknown. This audit aimed to understand provision of virtual CST (vCST) within National Health Service (NHS) memory clinics throughout the UK and Channel Islands and investigate plans for ongoing CST provision. A cross-sectional survey was circulated to NHS memory clinics, which included closed and open-ended questions to generate quantitative and qualitative data. Thirty-three memory clinics responded to the survey. During the pandemic, 55% of respondents offered vCST, whereas 45% offered no CST. Of those offering vCST, 80% plan to continue with a hybrid model of separate face-to-face and vCST groups, whilst 20% intend to deliver face-to-face CST only. Reported positive aspects of vCST were participant and staff enjoyment, perceived improved digital confidence in participants, and improved accessibility for those who cannot attend face-to-face groups. Negative aspects related to digital poverty, limited digital literacy, support needed from carers, the impact of sensory impairment on engagement, and staff time commitment. Virtual CST has been a feasible alternative to face-to-face services during the pandemic but should not completely replace in-person groups. A hybrid approach would increase accessibility for all. Future research should explore efficacy of vCST and seek to understand patterns of exclusion from such digital interventions.
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