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

Figures & data

Figure 1. Co-occupation enables shared presence, emotion and purpose (from Pickens & Pizur-Barnekow, 2009, p. 153)

Table 1. Participant demographics.

Gender of family carer	Age	RSS	Relation to person with dementia	Cohabiting	Gender of person with dementia	Age of person with dementia	CDR
Female	60	17	Spouse	Yes	Male	72	1
Female	66	4	Daughter	No	Female	93	1.3
Male	81	9	Spouse	Yes	Female	82	0.7
Female	60	17	Spouse	Yes	Male	65	0.5
Female	76	33	Spouse	Yes	Male	76	1.8
Female	68	26.5	Spouse	Yes	Male	77	1.6
Female	55	11	Spouse	Yes	male	62	1
Female	75	48	Spouse	Yes	male	80	2
Female	66	37	Spouse	Yes	Female	67	2
Female	66	48	Spouse	Yes	Male	66	1.3
Female	66	23	Spouse	Yes	Male	76	1

Key: RSS = Relatives’ Stress Scale, cut-off risk of psychological health problem in carer >23(Ulstein et al., 2007); CDR: Clinical Dementia Rating; ≤0,5 mild dementia, ≤1 mild dementia, ≤2 moderate dementia.

Table 2. Overview of topics, themes and sub-themes.

Topic	Themes	Sub-themes
Delivering iCST	Family carer’s first impression if the manual	A self-instructive manual (10)
		Starting iCST is overwhelming (4)
	Planning for a successful session	Prepare to individualise the programme (11)
		Finding the right time to initiate iCST (9)
	Revealing new insights	Resources and challenges were discovered (10)
		A new tool for the carer (7)
		Transferability of iCST principles (8)
Positive experiences with iCST	Positive experiences for person with dementia	iCST is engaging and fun (10)
		A sense of mastery and motivation (9)
	Positive experiences for dyad	Shared interaction (11)
		Learning to communicate in a new way (8)
Obstacles to iCST	Obstacles related to context or manual	Lack of time (10)
		Struggling to adapt materials and procedures (2)
		iCST feels like a test (4)
	Obstacles related to family carer	Negative beliefs about dementia (2)
		Uncomfortable in role of iCST deliverer (4)
		Uncertainty about delivering iCST (5)
	Obstacles related to person with dementia	Sensory and language impairment (3)
		Lack of mastery (9)
		Resistance to iCST (5)
		Fluctuations in concentration and tiredness (5)

Number of participant reports in parentheses.

Figure 2. The process of iCST becoming a tool for co-occupation for dyads living with dementia.

Pickens, N. D., & Pizur-Barnekow, K. (2009). Co-occupation: Extending the dialogue. Journal of Occupational Science, 16(3), 151–156. https://doi.org/10.1080/14427591.2009.9686656

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Ulstein, I., Wyller, T. B., & Engedal, K. (2007). High score on the Relative Stress Scale, a marker of possible psychiatric disorder in family carers of patients with dementia. International Journal of Geriatric Psychiatry, 22(3), 195–202. https://doi.org/10.1002/gps.1660

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