Empowering older people with early dementia and family caregivers: A participatory action research study

https://doi.org/10.1016/j.ijnurstu.2007.09.009Get rights and content

Abstract

Background

The increase in the number of people suffering from dementia is of increasing global concern. A survey on the living conditions of the elderly in a Japanese rural community revealed a high prevalence of early dementia and the necessity for interventions not only for the elderly with early dementia but also for their families.

Objective

To describe the implementation and process evaluation of a programme based on cognitive rehabilitation aimed at empowering the elderly with early dementia and education and counselling programmes aimed at likewise empowering their family caregivers.

Design

This study used a community health action research model. Participatory action research (PAR) was conducted through a cycle of planning, action, and reflection to identify effective interventions to empower participants with dementia (PsWD) and their caregivers.

Setting

A rural town in Japan.

Participants

This project involved 37 community-dwelling elderly with early or mild dementia and 31 family caregivers.

Methods

A focus group interview was used for assessment. A monthly activity-based programme based on cognitive rehabilitation was developed to improve cognitive function. Three types of data were collected: observational data collected during the activities, written comments from the caregivers, the record of phone interviews and counsellings with caregivers. These data were compiled in chronological order into a portfolio for analysis. To empower family caregivers, educational and counselling programmes were offered.

Results

The PAR lasted for 5 years and evolved over three cycles: individual, group and community. In the first cycle, the major focus of the intervention was to regain procedural skills for each PWD through a cooking programme. In the second cycle, to increase interactions with family members and with other PsWD, group activities that promoted communication among family members as well as among PsWD were implemented. The collective values and the beliefs of the PsWD's generation were validated by a series of trips to temples and shrines. In the third cycle, community participation was planned and implemented through culturally relevant sequential activities. PsWD demonstrated their expert skills and regained confidence. For family caregivers, the educational programme provided knowledge about dementia and utilization of social resources. Face-to-face and phone counsellings were offered as needed to coach problem-focused coping. These programmes helped to interpret the symptoms of dementia and to reduce the behavioural problems.

Conclusions

Cognitive rehabilitation theory was useful to restore lost procedural skills and regain confidence for PsWD. This PAR illustrated the importance of interventions for both community dwelling elderly with early dementia and their family caregivers.

Section snippets

What is already known about the topic?

  • Studies on interventions in very early dementia are scarce, and institutionalized elderly with advanced stages of dementia have been the major focus of dementia care research.

  • Few interventions on dementia care have targeted both the elderly with dementia and their family caregivers.

What this paper adds

  • Cognitive rehabilitation, by restoring lost procedural skills which demented persons used to like or to be good at, is an effective tool for regaining self-confidence in persons with early dementia.

  • Giving positive feedback to demented persons who have lost their confidence is an important element for their empowerment.

  • Education and counselling in the form of coaching are effective for family caregivers of dementia persons to cope with symptoms of dementia.

Design

We employed a participatory action research (PAR) approach to develop a group activity programme for community-dwelling elderly individuals with early dementia and education and counselling programmes for family caregivers. The model for PAR is a community intervention model employed in the field of community health nursing; this model is used by nurses to conduct community assessments, initiate community collaborations, involve the target population, and include reflection (Kelly, 2005). The

Assessment: issue identification

Seventeen family caregivers participated in the focus group interview. To summarize the conclusions of the interview (Nomura and Ohnakado, 2005), the elderly with early dementia were thought to be withdrawn or had a reduced motivation towards life. As the disease progressed, the time the demented elderly residents spent indoors increased. The caregivers did not consider this to be a serious situation, presuming it to be one of the symptoms of aging and only sought help from care providers after

Discussion

The uniqueness of our PAR was the application of cognitive rehabilitation theory to regain lost procedural skills to empower PsWD. Cooking played a major role in restoring confidence in PsWD. Cooking involves many interdisciplinary factors: safety, standing, balance, fine motor coordination, memory, visual skills, problem-solving, socialization and cooperation (Johnstone and Stonnington, 2001b). If menus are carefully chosen based on the cognitive function and potential of the PsWD, cooking

Conclusion

The PAR reported here using the cognitive rehabilitation theory was conducted to empower elderly PsWD with early dementia and their FCPs. The PAR helped these elderly PsWD to regain lost procedural skills and acquire confidence. The recognition of their skills by the group members and by their families appeared to be the most powerful component of empowerment. The education and counselling programmes for family caregivers promoted problem-focused coping skills and improved family relationships.

Acknowledgements

We would also like to extend our appreciation to all the participants, the officers of Iyo City and the stuff members of the programme. We would like to acknowledge Professor Yoshiko Nojima, former Shiga University of Medical Science for her valuable comments. This study was funded by the Ministry of Education, Culture, Sports, Science and Technology (No. 17592316).

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