Caregiver experience of the Norwegian manual for individual cognitive stimulation therapy (iCST): a qualitative study

Abstract

Objectives

This research project investigated how family carers in Norway experienced delivering iCST, their need for supervision and the potential for co-occupation.

Methods

Reflexive thematic analysis was used to understand the experiences of 11 carers using iCST for 8 wk. Three semi-structured interviews were conducted with each participant, including a pre-assessment of caregiver burden and a rating of dementia severity.

Results

Most carers described the manual as self-instructive. Some felt overwhelmed when starting iCST. It was important to plan and individualise the sessions to the specific needs of the person with dementia. After delivering iCST the carers described new insights into the person with dementia’s resources and challenges. Obstacles to doing iCST were related to the context, the manual or to specific challenges linked to the person with dementia or to the carer. Most participants described positive experiences, in which shared interaction, engagement and mastery were common.

Conclusion

When the carer understands the iCST programme as a tool and adapts it to the specific needs of the person with dementia then co-occupation and positive interactions happen. However, some carers would benefit from supervision and the iCST programme did not address all persons with dementia.

Keywords:

• Dementia
• family carers
• relation
• quality of life
• meaningful activities
• co-occupation

Acknowledgements

We would like to thank the participants for sharing their valuable experiences with us during this project.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Notes

1 Occupational justice means that all citizens should have fair access to occupations they need to accomplish everyday living (Wilcock & Hocking, 2015, p. 414).

2 The project was reported to the Norwegian Centre for Research Data – NSD and Regional Ethical Committee – REK, February 2022. REK found the project to be outside the field of health research, thus no approval is required.

Additional information

Funding

The author(s) reported there is no funding associated with the work featured in this article.