Validation of Questionnaire to Assess the Impact of Dementia on the Family

Methodological study. The instrument was designed based on literature review, expert opinion, and researchers’ experience and then applied to a non-probability convenience sample consisting of 262 family members who live daily with a person with dementia. The construct validity was studied by exploratory factor analysis, principal components method, with varimax rotation of the items.

Results:

An instrument with 30 items was obtained, distributed in four dimensions: “Emotional dimension,” “Economic dimension,” “Family relations dimension,” and “Support-seeking dimension.” Factor analysis revealed a total explained variance of 54.96% and a total Cronbach’s alpha of .899.

Conclusions:

The instrument presents high internal consistency, grouped into four dimensions, all closely related to the family’s adaptation to the onset of dementia in one of its members.

Descriptors:
Dementia; Family Relations; Validation Study; Nursing; Factor Analysis

	Components
	Family Relations	Emotional	Economic	Support-seeking
I easily cope with memory loss.	.728
I deal easily with physical and verbal aggression.	.772
I easily cope with mental confusion/disorientation	.796
I easily deal with inappropriate sexual behavior.	.610
I deal easily with evading behaviors.	.755
I easily cope with neglectful self-care behaviors.	.781
I deal easily with impulsive behavior.	.805
I easily cope with changes in pacing.	.726
I deal easily with frustration behavior.	.683
I feel exhausted due to the daily contact with the sick person.		.576
I feel irritated constantly.		.685
I have frequent insomnia.		.716
I have trouble concentrating.		.774
I wonder if he/she understands what is going on.		.497
I think a lot about the time I spent with the person without illness.		.578
I feel lonely.		.788
I feel sad.		.747
I have feelings of anger and frustration.		.597
I wonder about the meaning of companionship.		.428
I consider that there was a reduction in the family income.			.700
I consider that there was an increase in the medication expenses.			.745
I consider that there was an increase in expenses with the hiring of health professionals for care at home.			.800
I consider that there was an increase in the expenses with clinical equipment.			.846
I believe that there was an increase in travel expenses (treatments, consultations, and others).			.824
The disease caused an increase in the expenses with structural alterations in the residence (renovations in the bathroom, bedroom, among others).			.762
I feel that I have abandoned some of my personal projects.				.518
I feel that I have abandoned some of my professional projects.				.530
I turn to doctors as the main information resources.				.700
I turn to nurses as the main information resources.				.841
The Internet is the main source of information I use.				.460
Variance explained by each factor (%)	19.799	16.83	11.388	7.089

Dimension	Items	M	SD	Corrected item-total correlation	Cronbach's alpha if item deleted
Family Relations	I easily deal with physical and verbal aggression.	1.40	.925	.715	.884
	I easily cope with mental confusion/disorientation.	1.58	.875	.736	.883
	I easily cope with memory loss.	1.60	.873	.645	.890
	I easily deal with inappropriate sexual behavior.	1.21	.972	.557	.897
	I easily deal with evasion behavior.	1.30	.905	.681	.887
	I easily deal with neglectful self-care behaviors.	1.36	.882	.722	.884
	I deal easily with impulsive behavior.	1.52	.934	.731	.883
	I handle pacing changes easily.	1.58	.992	.642	.890
	I deal easily with frustration behavior.	1.72	.917	.580	.895
Cronbach's alpha of the dimension	.899
Emotional	I think a lot about the time I spent with the person without the disease.	1.75	.984	.519	.835
	I have frequent insomnia.	1.54	.921	.624	.825
	I wonder if he/she understands what is going on.	1.86	.915	.452	.840
	I feel lonely.	1.49	.995	.713	.816
	I feel irritated constantly.	1.70	.842	.604	.828
	I have trouble concentrating.	1.47	.904	.664	.822
	I feel exhausted due to the daily contact with the sick person.	1.89	.832	.487	.837
	I feel sad.	1.33	1.031	.633	.824
	I have feelings of anger and frustration.	1.33	.995	.462	.840
	I wonder about the meaning of companionship.	1.22	.998	.325	.853
Cronbach's alpha of the dimension	.846
Economic	I consider that there has been a reduction in family income.	1.94	.910	.659	.865
	I consider that there has been an increase in the expenses for the medication.	2.01	.934	.667	.864
	I consider that there has been an increase in expenses for hiring health professionals for care at home.	1.55	1.109	.701	.859
	I consider that there has been an increase in spending on clinical equipment.	1.44	1.087	.742	.851
	I consider that there was an increase in travel expenses.	1.85	.955	.752	.850
	The disease caused increased spending on structural changes in the residence.	1.54	1.025	.628	.870
Cronbach's alpha of the dimension	.881
Support-seeking	I feel I have abandoned some of my personal projects.	1.93	1.089	.540	.576
	I feel I have abandoned some of my professional projects.	1.65	1.117	.580	.555
	I turn to doctors as the main information resource.	1.62	1.038	.288	.686
	I turn to nurses as my main information resources.	1.75	.971	.557	.576
	The Internet is the main source of information I use.	1.71	1.145	.240	.714
Cronbach's alpha of the dimension	.678

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[1] Corresponding author: Mafalda Sofia Gomes Oliveira da Silva, E-mail: mafaldassilva@hotmail.com