Dynamics of Interaction among Professionals, Informal Supporters, and Family Caregivers of People with Dementia along the Dementia Care Pathway: A Nationwide Survey in Japan
Abstract
:1. Introduction
2. Materials and Methods
2.1. Participants and Procedures
2.2. Questionnaire
2.3. Statistics
3. Results
4. Discussion
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
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People with Dementia | ||
---|---|---|
Mean | SD | |
Age (years) | 81.4 | 8.7 |
Diagnosis | n | % |
Alzheimer-type dementia | 1528 | 67.7 |
Vascular dementia | 96 | 4.3 |
Dementia with Lewy bodies | 115 | 5.1 |
Frontotemporal dementia | 94 | 4.2 |
Mixed dementia | 49 | 2.2 |
Diagnosed with dementia | 266 | 11.8 |
Mild cognitive impairment | 64 | 2.8 |
Other type of dementia | 37 | 1.6 |
Not diagnosed | 9 | 0.4 |
Total | 2258 | 100 |
Living arrangements | n | % |
Living alone | 279 | 12.3 |
Married couple household | 905 | 39.9 |
Living with children | 753 | 33.2 |
Other | 332 | 14.6 |
Total | 2269 | 100 |
Care certificate (Care level) | n | % |
Care level 1 | 249 | 11.1 |
Care level 2 | 160 | 7.1 |
Care level 3 | 614 | 27.3 |
Care level 4 | 401 | 17.8 |
Care level 5 | 364 | 16.2 |
Care level 6 | 201 | 8.9 |
Care level 7 | 258 | 11.5 |
Total | 2247 | 100 |
Family Caregivers | ||
Mean | SD | |
Age (years) | 64.5 | 11.9 |
Sex (female, %) | 70.6 | |
Living situation | n | % |
Living together | 1487 | 64.8 |
Living nearby | 658 | 28.7 |
Living far away | 150 | 6.5 |
Total | 2295 | 100 |
Relationship with person with dementia | n | % |
Husband | 577 | 25.1 |
Wife | 387 | 16.9 |
Father | 199 | 8.7 |
Mother | 792 | 34.5 |
Father-in-law | 48 | 2.1 |
Mother-in-law | 186 | 8.1 |
Brothers or sisters | 27 | 1.2 |
Grandparents | 39 | 1.7 |
Children | 2 | 0.1 |
Other | 38 | 1.7 |
Total | 2295 | 100 |
Work | n | % |
Working | 1111 | 49 |
Not working | 1112 | 49.1 |
Other | 43 | 1.9 |
Total | 2266 | 100 |
Total (n = 2295) | Quartile 1 (n = 481) | Quartile 2 (n = 591) | Quartile 3 (n = 552) | Quartile 4 (n = 671) | |||||||
---|---|---|---|---|---|---|---|---|---|---|---|
Mean | SD | Mean | SD | Mean | SD | Mean | SD | Mean | SD | p | |
Time from diagnosis (years) | 5.14 | 4.42 | 0.73 | 0.4 | 2.52 * | 0.49 | 4.89 * | 0.73 | 10.82 * | 3.7 | <0.001 |
Care certification (Care Level) | 3.94 | 1.76 | 2.76 | 1.41 | 3.38 * | 1.43 | 4.14 * | 1.55 | 5.10 * | 1.67 | <0.001 |
Number of types of information provided from medical institution (0–13) | 4.47 | 2.77 | 4.22 | 2.65 | 4.45 | 2.84 | 4.54 | 2.81 | 4.6 | 2.75 | 0.196 |
Number of persons consulted (0–14) | 3.58 | 2.04 | 3.22 | 1.83 | 3.49 | 1.93 | 3.74 * | 2.12 | 3.78 * | 2.17 | <0.001 |
Number of matters requested for consultation (0–9) | 3.41 | 2.01 | 3.18 | 1.99 | 3.38 | 1.96 | 3.48 * | 1.98 | 3.52 * | 2.07 | 0.017 |
Extent of information obtained (1–4) | 1.92 | 0.65 | 1.92 | 0.64 | 1.96 | 0.65 | 1.9 | 0.65 | 1.91 | 0.67 | 0.317 |
Satisfaction with information obtained (0–10) | 6.37 | 2.23 | 6.4 | 2.33 | 6.34 | 2.2 | 6.44 | 2.12 | 6.32 | 2.28 | 0.894 |
Extent of acceptance (1–4) | 3.34 | 0.79 | 3.09 | 0.86 | 3.27 * | 0.78 | 3.40 * | 0.77 | 3.53 * | 0.7 | <0.001 |
Extent of harshness (1–4) | 2.24 | 0.85 | 2.3 | 0.85 | 2.31 | 0.83 | 2.27 | 0.86 | 2.09 * | 0.85 | <0.001 |
Extent of change in life (1–4) | 2.96 | 0.88 | 2.76 | 0.9 | 2.85 | 0.85 | 3.02 * | 0.84 | 3.16 * | 0.86 | <0.001 |
n | % | |
---|---|---|
Name of the disease | 1848 | 80.5 |
Severity of dementia | 1179 | 51.4 |
Drugs for the treatment of dementia | 1722 | 75.0 |
Future prospects of dementia | 888 | 38.7 |
Daily life precautions related to dementia | 941 | 41.0 |
Contact information in case of emergency (e.g., when a caregiver’s family member is unwell or the person with dementia is missing or in trouble) | 375 | 16.3 |
Information about driving while suffering from dementia | 410 | 17.9 |
Information booklet on dementia | 505 | 22.0 |
Information on long-term care insurance services | 848 | 36.9 |
Advice on how to cope with, feel, and accept the disease of dementia | 669 | 29.2 |
Notification of opportunities for discussion among family caregivers in the same position, such as gatherings through family associations | 407 | 17.7 |
Information about the availability of dementia consultation calls | 165 | 7.2 |
Information on dementia cafés | 299 | 13.0 |
Total | Quartile 1 | Quartile 2 | Quartile 3 | Quartile 4 | p | |
---|---|---|---|---|---|---|
2275 | 478 | 586 | 546 | 665 | ||
Family members, n (%) | 1319 (58) | 307 (64.2) † | 356 (60.8) | 314 (57.5) | 342 (51.4) * | <0.001 |
Primary care physician, n (%) | 809 (35.6) | 163 (34.1) | 218 (37.2) | 210 (38.5) | 218 (32.8) | 0.146 |
Dementia specialist, n (%) | 693 (30.5) | 139 (29.1) | 175 (29.9) | 156 (28.6) | 223 (33.5) | 0.22 |
Long-term care facility staff, n (%) | 660 (29) | 73 (15.3) * | 153 (26.1) | 188 (34.4) † | 246 (37.0) † | <0.001 |
Care manager, n (%) | 1421 (62.5 | 231 (48.3) * | 359 (61.3) | 373 (68.3) † | 458 (68.9) † | <0.001 |
Community comprehensive support center staff, n (%) | 825 (36.3) | 206 (43.1) * | 219 (37.4) | 186 (34.1) | 214 (32.2) † | 0.001 |
Nurses at medical institutions, n (%) | 176 (7.7) | 36 (7.5) | 47 (8) | 40 (7.3) | 53 (8) | 0.965 |
Community dementia care promoters, n (%) | 209 (9.2) | 39 (8.2) | 55 (9.4) | 55 (10.1) | 60 (9) | 0.76 |
Workplace colleagues of the person with dementia, n (%) | 53 (2.3) | 9 (1.9) | 12 (2) | 15 (2.7) | 17 (2.6) | 0.755 |
Workplace colleagues of caregiver, n (%) | 275 (12.1) | 67 (14) | 80 (13.7) | 60 (11) | 68 (10.2) | 0.121 |
Friends with caregiving experience, n (%) | 777 (34.2) | 144 (30.1) * | 179 (30.5) * | 211 (38.6) † | 243 (36.5) | 0.004 |
Friends without caregiving experience, n (%) | 138 (6.1) | 27 (5.6) | 37 (6.3) | 34 (6.2) | 40 (6) | 0.971 |
Other family caregivers, n (%) | 508 (22.3) | 45 (9.4) * | 93 (15.9) * | 131 (24) | 239 (35.9) † | <0.001 |
Dementia café staff, n (%) | 300 (13.2) | 49 (10.3) * | 64 (10.9) | 82 (15) | 105 (15.8) † | 0.008 |
Total | Quartile 1 | Quartile 2 | Quartile 3 | Quartile 4 | p | |
---|---|---|---|---|---|---|
2221 | 462 | 572 | 537 | 650 | ||
Advice regarding daily life (points to keep in mind, etc.), n (%) | 1319 (59.4) | 267 (57.8) | 336 (58.7) | 325 (60.5) | 391 (60.2) | ns |
Advice regarding communication with people with dementia, n (%) | 1242 (55.9) | 250 (54.1) | 317 (55.4) | 299 (55.7) | 376 (57.8) | ns |
Information on the treatment of dementia, n (%) | 731 (32.9) | 167 (36.1) | 195 (34.1) | 162 (30.2) | 207 (31.8) | ns |
Information on the symptoms and progression of dementia moving forward, n (%) | 1147 (51.6) | 215 (46.5) * | 294 (51.4) | 276 (51.4) | 362 (55.7) † | 0.028 |
Contact information for emergencies (e.g., when a caregiver’s family member is unwell, when the person with dementia is missing or in trouble, etc.), n (%) | 429 (19.3) | 80 (17.3) | 98 (17.1) | 123 (22.9) | 128 (19.7) | ns |
Financial matters and household finances, n (%) | 452 (20.4) | 95 (20.6) | 121 (21.2) | 115 (21.4) | 121 (18.6) | ns |
Advice on the use of social resources (long-term care insurance services, family groups, dementia cafés, etc.), n (%) | 949 (42.7) | 181 (39.2) | 222 (38.8) * | 248 (46.2) | 298 (45.8) | 0.011 |
Just wanting to be listened to, n (%) | 814 (36.7) | 155 (33.5) | 225 (39.3) | 196 (36.5) | 238 (36.6) | ns |
Wanting to be understood and to convey the difficulties of caregiving, n (%) | 710 (32) | 114 (24.7) * | 186 (32.5) | 173 (32.2) | 237 (36.5) † | < 0.001 |
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Takechi, H.; Hara, N.; Eguchi, K.; Inomata, S.; Okura, Y.; Shibuya, M.; Yoshino, H.; Ogawa, N.; Suzuki, M. Dynamics of Interaction among Professionals, Informal Supporters, and Family Caregivers of People with Dementia along the Dementia Care Pathway: A Nationwide Survey in Japan. Int. J. Environ. Res. Public Health 2023, 20, 5044. https://doi.org/10.3390/ijerph20065044
Takechi H, Hara N, Eguchi K, Inomata S, Okura Y, Shibuya M, Yoshino H, Ogawa N, Suzuki M. Dynamics of Interaction among Professionals, Informal Supporters, and Family Caregivers of People with Dementia along the Dementia Care Pathway: A Nationwide Survey in Japan. International Journal of Environmental Research and Public Health. 2023; 20(6):5044. https://doi.org/10.3390/ijerph20065044
Chicago/Turabian StyleTakechi, Hajime, Naoko Hara, Kyoko Eguchi, Shoko Inomata, Yuki Okura, Miwa Shibuya, Hiroshi Yoshino, Noriyuki Ogawa, and Morio Suzuki. 2023. "Dynamics of Interaction among Professionals, Informal Supporters, and Family Caregivers of People with Dementia along the Dementia Care Pathway: A Nationwide Survey in Japan" International Journal of Environmental Research and Public Health 20, no. 6: 5044. https://doi.org/10.3390/ijerph20065044