Characteristics, Burden of Care and Quality of Life of Next of Kin of People with Dementia Attending Farm-Based Day Care in Norway: A Descriptive Cross-Sectional Study

Figures & data

Table 1 Characteristics of the Next of Kin (N= 94)

Next of Kin	All	Living with Group One (n=57)	Not Living with Group Two (n=37)	P-value
Age Mean (SD) Range	63.6 (12.3) 32–87	70.9 (7.9) 54–87	52.7 (9.4) 32–69	<0.001^*
Females n (%)	73 (77.7)	45 (78.9)	28 (75.7)	0.710^**
Spouses/partner n (%)	58 (61.7)	57 (100)	1 (2.7)	<0.001^**
Children n (%)	30 (31.9)	0	30 (81.1)
Others n (%)	6 (6.4)	0	6 (16.2)
Education
Primary school n (%)	18 (19.1)	12 (21.4)	6 (16.2)	0.008^**
High school n (%)	35 (37.6)	27 (48.2)	8 (21.6)
College/University n (%)	40 (43.0)	17 (30.4)	23 (62.2)
Employed outside household n (%)	42 (44.7)	12 (21.1)	30 (81.1)	<0.00^*
Having hobbies (n 93) n (%)	78 (83.9)	45 (80.4)	33 (89.2)	0.257^**
Being physically active (n 90) n (%)	83 (92.2)	46 (86.8)	37 (100)	0.039^***
Caregiver school (n 93) n (%)	49 (53)	36 (64)	13 (35)	0.006^**
Days spent on caring monthly, Mean (SD)	18.4 (10.8)	24.9 (7.8)	9.0 (7.0)	<0.001^*
Respite-days per week, Mean (SD)	2.5 (1.0)	2.5 (1.0)	2.5 (1.0)	0.919^*
Month with respite (n 92), Mean (SD)	18.6 (18)	16.3 (16.8)	22 (19.3)	0.137^*
HAD-A^a score (n 91), Mean (SD)	4.5 (3.4)	4.4 (3.4)	4.5 (3.5)	0.954^*
MADRS^b score (n 90), Mean (SD)	3.7 (3.9)	4.4 (4.3)	2.6 (2.9)	0.016^****
QoL-AD^c score (n 93), Mean (SD)	40.6 (4.9)	39.5 (4.6)	42.4 (5.0)	0.005^*
RSS^d score, Mean (SD)	20.8 (11.6)	25.3 (11.0)	14.1 (9.0)	<0.001^*
OSS-3^e score (n 92), Mean (SD)	10.5 (2.2)	10.1 (2.1)	11.2 (2.1)	0.010^*

Notes: ^*Independent samples t-test. ^**The χ2 tests. ^***Fisher’s Exact Test. ^****Mann–Whitney U-test.

Abbreviations: HAD-A^a, The anxiety part of the Hospital Anxiety & Depression Scale (HAD);⁴⁰ MADRS^b, Montgomery-Aasberg Depression Rating Scale;⁴³ QoL-AD^c, Quality of Life-Alzheimer Disease questionnaire;³⁶ RSS^d, Relative Stress Scale;³⁸ OSS-3^e, Oslo Social Support Scale.⁴¹

Table 2 Characteristics of People with Dementia (n=94)

People with Dementia	All	Living with Group One (n=57)	Not Living with Group Two (n=37)	P-value
CDR-SOB^a, Mean (SD)	7.4 (3.2)	8.1 (3.4)	6.4 (2.6)	0.012^*
NPI^b score, Mean (SD)	12.1 (12.8)	13.4 (12.1)	10.2 (13.7)	0.236^*
IADL^c score, Mean (SD)	21.7 (5.6)	23.1 (5.4)	19.4 (5.3)	0.001^*
Number of months with symptoms of dementia, Mean (SD)	70.6 (55.6)	75.8 (66.0)	62.0 (35.9)	0.223^*

Note: ^*Independent samples t-test.

Abbreviations: CDR-SOB^a, Clinical Dementia Rating Scale, Sum of Boxes;⁴⁶ NPI^b, The Neuropsychiatric Inventory Scale, Intensity x Frequency;⁴⁴ Lawton & Brody`s^c, Instrumental ADL Scale (IADL).⁴⁵

Table 3 Univariate and Multiple Models’ Associations Between the RSS and Next of Kin and People with Dementia Characteristics

Next of kin	Univariate Model RSS Score		Multiple Model RSS Score
	Standardized β	P-value	Standardized β	P-value
Gender (Female =0, Male=1)	−0.167	0.099	−0.056	0.465
Living (No=0, Yes=1)	0.472	<0.001	0.341	<0.001
Having hobbies (No=0, Yes=1)	−0.158	0.115	−0.105	0.161
Being physically active (No=0, Yes=1)	−0.043	0.671
Caregiver school (No=0, Yes =1)	0.184	0.081	0.033	0.682
Respite - days per week	0.143	0.159	0.012	0.880
HAD-A^a score	0.481	<0.001	0.276	<0.001
MADRS^b score	0.466	<0.001	0.163	0.117
OSS 3^c score	−0.327	<0.001	−0.209	0.007
People with dementia
CDR-SOB^d score	0.109	0.301
NPI^e score (Intensity x Frequency)	0.397	<0.001	0.295	<0.001
IADL^f score	0.154	0.135	−0.065	0.385
Number of months with symptoms of dementia	0.182	0.070	0.062	0.386
Intra Class Correlation (ICC)=0.105 = 10.5%
Proportion of ICC explained by the model (R2^2)			1.00 = 100%
Explained variance between participants (R1^2)			0.620 = 62.0%

Abbreviations: HAD-A^a, The anxiety part of the Hospital Anxiety & Depression scale (HAD);⁴⁰ MADRS^b, Montgomery Aasberg Depression Rating Scale;⁴³ OSS-3^c, Oslo Social Support Scale;⁴¹ CDR-SOB^d, Clinical Dementia Rating Scale, Sum of Boxes;⁴⁶ NPI^e, The Neuropsychiatric Inventory scale, Intensity x Frequency;⁴⁴ IADL^f, Lawton & Brody`s Instrumental ADL Scale (IADL).⁴⁵

Table 4 Univariate and Multiple Models’ Associations Between the QoL-AD and Next of Kin and People with Dementia Characteristics

Next of Kin	Univariate Model QoL-AD		Multiple Model QoL-AD
	Standardized β	P-value	Standardized β	P-value
Gender (Female =0, Male=1)	0.026	0.799
Living (No=0, Yes=1)	−0.281	0.005	−0.336	0.004
Having hobbies (No=0, Yes=1)	0.081	0.426
Being physically active (No=0, Yes=1)	0.103	0.327
Caregiver school (No=0, Yes=1)	−0.070	0.513
Respite - days per week	−0.065	0.523
HAD-A^a score	−0.587	< 0.001	−0.541	< 0.001
MADRS^b score	−0.341	< 0.001	−0.221	0.234
RSS^c score	−0.439	< 0.001	−0.005	0.970
OSS 3^d score	0.305	0.002	0.204	0.025
Interaction variable – MADRS x Living*			0.259	0.212
People with dementia
CDR-SOB^e score	−0.129	0.200	−0.007	0.934
NPI^f score (Intensity x Frequency)	−0.160	0.112	0.018	0.846
IADL^g score	0.043	0.676
Number of months with dementia symptoms	0.022	0.841
Intra Class Correlation (ICC)=0.117 = 11.7%
Proportion of ICC explained by the model (R2^2)			1.00 = 100%
Explained variance between participants (R1^2)			0.400 = 40.0%

Note: Interaction variable* MADRS: Montgomery-Aasberg Depression Rating x Living variable.

Abbreviations: HAD-A^a, The anxiety part of the Hospital Anxiety & Depression scale (HAD);⁴⁰ MADRS^b, Montgomery Aasberg Depression Rating Scale;⁴³ RSS^c, Relative Stress Scale;³⁸ dOSS-3, Oslo Social Support Scale;⁴¹ CDR-SOB^e, Clinical Dementia Rating Scale, Sum of Boxes;⁴⁶ NPI^f, The Neuropsychiatric Inventory scale, Intensity x Frequency;⁴⁴ IADL^g, Lawton & Brody`s Instrumental ADL Scale (IADL).⁴⁵

Zigmond AS, Snaith RP. The hospital anxiety and depression scale. Acta Psychiatr Scand. 1983;67(6):361–370. doi:10.1111/j.1600-0447.1983.tb09716.x

 PubMed Web of Science ®Google Scholar

Montgomery SA, Asberg M. A new depression scale designed to be sensitive to change. Br J Psychiatry. 1979;134(4):382–389. doi:10.1192/bjp.134.4.382

 PubMed Web of Science ®Google Scholar

Logsdon RG, Gibbons LE, Mc Curry SM, Teri L. Quality of life in Alzheimer’s disease: patients and caregiver reports. J Ment Health Aging. 1999;5(1):21–32.

 Google Scholar

Green JG, Smith R, Gardiner M, Timbury GC. Measuring behavioural disturbance of elderly demented patients in the community and its effects on relatives: a factor analytic study. Age Ageing. 1982;11(2):121–126. doi:10.1093/ageing/11.2.121

 Google Scholar

Dalgard OS, Dowrick C, Lehtinen V, et al. Negative life events, social support and gender difference in depression: a multinational community survey with data from the ODIN study. Soc Psychiatry Psychiatr Epidemiol. 2006;41(6):444–451. doi:10.1007/s00127-006-0051-5

 PubMed Web of Science ®Google Scholar

Hughes CP, Berg L, Danziger WL, Coben LA, Martin RL. A new clinical scale for the staging of dementia. Br J Psychiatry. 1982;140(6):566–572. doi:10.1192/bjp.140.6.566

 PubMed Web of Science ®Google Scholar

Cummings JL, Mega M, Gray K, Rosenberg-Thomsen S, Carusi DA, Gornbein J. The neuropsychiatric inventory: comprehensive assessment of psychopathology in dementia. Neurology. 1994;44(12):2308–2314. doi:10.1212/WNL.44.12.2308

 PubMed Web of Science ®Google Scholar

Lawton MP, Brody EM. Assessment of older people: self-maintaining and instrumental activities of daily living. Gerontologist. 1969;9(9):179–186. doi:10.1093/geront/9.3_Part_1.179

 Web of Science ®Google Scholar