Burden of caring for Alzheimer’s disease or dementia patients in Japan, the US, and EU: results from the National Health and Wellness Survey: a cross-sectional survey

Figures & data

Figure 1. Respondent flow chart.

Table 1. Demographic and health characteristics among caregivers of AD/dementia patients in Japan, the US, and 5EU.

	Japan (N = 805)		US (N = 1,887)		5EU (N = 1,426)		p-value
	%	n	%	n	%	n	Japan vs. the US	Japan vs. 5EU	US vs. 5EU
Age group
18–29	12.2%	98	21.3%	402	19.5%	278	<.001	<.001	.002
30–39	8.0%	64	13.8%	261	10.8%	154
40–49	8.0%	64	15.5%	293	16.1%	229
50–64	35.2%	283	33.9%	640	33.7%	481
≥65	36.8%	296	15.4%	291	19.9%	284
Gender
Male	48.1%	387	38.5%	726	43.6%	622	<.001	.042	.003
Female	51.9%	418	61.5%	1,161	56.4%	804
Marital status
Single	24.6%	198	28.7%	542	25.0%	356	.001	.393	.015
Married or living with partner	66.3%	534	58.4%	1,102	63.7%	909
Divorced/separated/widowed	8.9%	72	12.6%	237	11.2%	159
Decline to answer	0.1%	1	0.3%	6	0.1%	2
Level of education
Completed university education	62.1%	500	45.2%	853	48.8%	696	<.001	<.001	.040
Not/decline to answer	37.9%	305	54.8%	1,034	51.2%	730
Employment status
Not currently employed	46.5%	374	42.7%	806	42.8%	610	.073	.092	.971
Currently employed	53.5%	431	57.3%	1,081	57.2%	816
Number of children in the household
0	86.3%	695	67.5%	1,274	68.7%	980	<.001	<.001	.361
1	7.8%	63	17.0%	320	16.1%	229
2	4.0%	32	10.7%	201	11.4%	163
≥3	1.9%	15	4.9%	92	3.8%	54
Charlson comorbidity index
CCI = 0	78.9%	635	64.7%	1,220	70.5%	1,005	<.001	<.001	.001
CCI = 1	14.5%	117	19.1%	361	17.7%	253
CCI = 2	4.6%	37	9.1%	171	6.2%	88
CCI ≥ 3	2.0%	16	7.2%	135	5.6%	80
BMI
Underweight (BMI < 18.5)	9.9%	80	3.6%	67	4.1%	59	<.001	<.001	<.001
Normal (18.5 ≤ BMI < 25)	68.6%	552	30.4%	574	38.6%	550
Overweight (25 ≤ BMI < 30)	16.1%	130	29.8%	563	32.6%	465
Obese (BMI ≥ 30)	3.4%	27	31.5%	594	18.9%	270
Declined to answer	2.0%	16	4.7%	89	5.8%	82
Smoking status
Not currently smoking	79.9%	643	78.9%	1,488	71.7%	1,023	.551	<.001	<.001
Currently smoking	20.1%	162	21.1%	399	28.3%	403
Alcohol use
No more than once a week	56.9%	458	72.1%	1,361	66.3%	946	<.001	<.001	<.001
At least 2–3 times a week	43.1%	347	27.9%	526	33.7%	480
Exercise frequency in past month
0–11 times	79.6%	641	69.9%	1,319	75.1%	1,071	<.001	.015	.001
≥12 times	20.4%	164	30.1%	568	24.9%	355
Currently taking steps to lose weight
No	73.5%	592	43.1%	813	59.0%	841	<.001	<.001	<.001
Yes	26.5%	213	56.9%	1,074	41.0%	585

Table 2. Involvement of caregiving in different types of caregiving tasks in caregivers of AD/dementia patients in Japan, the US, and 5EU.

	Japan (N = 805)		US (N = 1,887)		5EU (N = 1,426)		p-value
	%	n	%	n	%	n	Japan vs. the US	Japan vs. 5EU	US vs. 5EU
Bathing/grooming/toileting/feeding/transferring/incontinence
I am not involved at all	53.3%	429	49.1%	926	48.7%	694	.072	.222	.076
I help out occasionally	20.6%	166	19.9%	376	21.3%	304
I help out regularly, but another family member or friend is more involved	8.2%	66	9.1%	172	10.2%	146
I share these responsibilities in equal parts with another family member or friend	6.8%	55	7.0%	133	8.0%	114
I am mainly responsible for these tasks	11.1%	89	14.8%	280	11.8%	168
Transportation/meal/grocery/housework/medication/outside services
I am not involved at all	34.5%	278	16.1%	304	24.3%	346	<.001	<.001	<.001
I help out occasionally	24.6%	198	22.2%	419	22.4%	320
I help out regularly, but another family member or friend is more involved	13.2%	106	17.2%	324	18.4%	263
I share these responsibilities in equal parts with another family member or friend	7.5%	60	15.2%	287	14.5%	207
I am mainly responsible for these tasks	20.2%	163	29.3%	553	20.3%	290
Treatment decision/Nursing home placement
I am not involved at all	31.9%	257	20.3%	384	22.0%	314	<.001	<.001	.001
I help out occasionally	15.8%	127	13.4%	252	14.5%	207
I help out regularly, but another family member or friend is more involved	10.1%	81	14.8%	279	16.8%	240
I share these responsibilities in equal parts with another family member or friend	10.2%	82	19.9%	375	21.7%	310
I am mainly responsible for these tasks	32.0%	258	31.6%	597	24.9%	355
Finances
I am not involved at all	33.5%	270	23.3%	440	22.3%	318	<.001	<.001	<.001
I help out occasionally	12.5%	101	13.9%	263	14.9%	212
I help out regularly, but another family member or friend is more involved	9.4%	76	11.4%	216	15.0%	214
I share these responsibilities in equal parts with another family member or friend	6.1%	49	13.8%	261	17.1%	244
I am mainly responsible for these tasks	38.4%	309	37.5%	707	30.7%	438

Table 3. Involvement of caregiving in different types of caregiving tasks in caregivers of AD/dementia patients with different living arrangements in Japan, the US, and 5EU.

	Japan					US					5EU
	On own, in his/ her home, or with the caregiver (N = 395)		A specialist center or hospital or in an assisted living center or nursing home (N = 282)		p-value	On own, in his/ her home, or with the caregiver (N = 1,056)		A specialist center or hospital or in an assisted living center or nursing home (N = 350)			On own, in his/ her home, or with the caregiver (N = 729)		A specialist center or hospital or in an assisted living center or nursing home (N = 282)		p-value
	%	n	%	n		%	n	%	n	p-value	%	n	%	n
Involvement in caregiving tasks
Bathing/grooming/toileting/feeding/transferring/incontinence
I am not involved at all	39.2%	155	73.4%	207	<.001	48.2%	509	62.0%	217	<.001	43.3%	316	72.7%	205	<.001
I help out occasionally	24.3%	96	16.7%	47		18.6%	196	25.1%	88		21.8%	159	16.7%	47
I help out regularly, but another family member or friend is more involved	9.6%	38	6.0%	17		10.0%	106	5.7%	20		11.7%	85	3.2%	9
I share these responsibilities in equal parts with another family member or friend	8.9%	35	2.8%	8		6.2%	65	3.4%	12		9.1%	66	4.3%	12
I am mainly responsible for these tasks	18.0%	71	1.1%	3		17.0%	180	3.7%	13		14.1%	103	3.2%	9
Transportation/meal/grocery/housework/medication/outside services
I am not involved at all	15.2%	60	63.1%	178	<.001	10.2%	108	41.4%	145	<.001	13.9%	101	61.3%	173	<.001
I help out occasionally	26.1%	103	23.4%	66		19.1%	202	29.4%	103		22.5%	164	19.1%	54
I help out regularly, but another family member or friend is more involved	14.9%	59	8.5%	24		17.7%	187	12.9%	45		21.1%	154	9.6%	27
I share these responsibilities in equal parts with another family member or friend	11.4%	45	2.5%	7		15.7%	166	7.7%	27		17.4%	127	6.0%	17
I am mainly responsible for these tasks	32.4%	128	2.5%	7		37.2%	393	8.6%	30		25.1%	183	3.9%	11
Treatment decision/nursing home placement
I am not involved at all	29.9%	118	32.3%	91	.708	23.1%	244	16.6%	58	.104	19.9%	145	28.7%	81	.014
I help out occasionally	17.2%	68	14.2%	40		13.5%	143	13.1%	46		14.3%	104	14.2%	40
I help out regularly, but another family member or friend is more involved	9.4%	37	11.0%	31		13.9%	147	14.0%	49		16.9%	123	12.8%	36
I share these responsibilities in equal parts with another family member or friend	9.1%	36	10.3%	29		17.8%	188	20.6%	72		23.5%	171	17.7%	50
I am mainly responsible for these tasks	34.4%	136	32.3%	91		31.6%	334	35.7%	125		25.5%	186	26.6%	75
Finances
I am not involved at all	31.1%	123	36.2%	102	.021	25.8%	272	20.9%	73	.011	22.1%	161	20.9%	59	.270
I help out occasionally	15.7%	62	7.8%	22		13.1%	138	14.0%	49		14.7%	107	12.8%	36
I help out regularly, but another family member or friend is more involved	8.6%	34	8.2%	23		10.7%	113	8.6%	30		15.0%	109	12.1%	34
I share these responsibilities in equal parts with another family member or friend	5.3%	21	8.2%	23		13.9%	147	10.3%	36		17.1%	125	16.0%	45
I am mainly responsible for these tasks	39.2%	155	39.7%	112		36.6%	386	46.3%	162		31.1%	227	38.3%	108

Figure 2. HRQoL, WPAI, and depression and anxiety among caregivers of AD/dementia patients in Japan, the US, and 5EU.

Data availability statement

The data that support the findings of this study are available from Kantar, but restrictions apply to the availability of these data, which were used under license for the current study, and so are not publicly available. Data are, however, available from the corresponding author, S.O., upon reasonable request and with permission of Kantar.