Taking care of patients with dementia is often stressful and exhausting. The burden placed on caregivers (CGs) for care recipients with dementia (CRDs) has been reported to cause psychological distress.
Objective:
The aim of this study was to evaluate the psychological distress experienced by CGs for CRDs and identify the sociodemographic factors affecting that distress.
Methods:
We utilized the 2013 Comprehensive Survey of the Living Conditions for CRDs and CGs. Linked data from 643 pairs of CRDs and CGs were extracted. Serious psychological distress experienced by CGs was measured by Kessler’s Psychological Distress scale (K6) with a cutoff point of 13. Factors predictive of psychological distress were evaluated using multivariable logistic regression analysis with the forward selection method.
Results:
Overall, the mean age of the CGs was 63.5±11.6 years, and 5.3%(34/643) experienced serious psychological distress. Male sex of CRDs, knowing how to access consulting services, spending almost all day for nursing care, and having subjective symptoms within a few days of completing the survey were associated with having serious psychological distress, while older age, participating in shopping as part of the nursing activities, and having their own house were related to freedom from serious psychological distress.
Conclusion:
Clinicians should be aware of the risk factors for psychological distress in CGs and consider providing support to reduce the distress imposed by modifiable factors. Further studies are warranted to examine whether such efforts would improve the mental health of CGs for CRDs.
von KutzlebenM, SchmidW, HalekM, HolleB, BartholomeyczikS (2012) Community-dwelling persons with dementia: what do they need? What do they demand? What do they do? A systematic review on the subjective experiences of persons with dementia. Aging Ment Health16, 378–390.
4.
GranoC, LucidiF, ViolaniC (2011) The relationship between caregiving self-efficacy and depressive symptoms in family caregivers of patients with Alzheimer disease: A longitudinal study. Int Psychogeriatr29, 1095–1103.
5.
TamiyaN, NoguchiH, NishiA, ReichMR, IkegamiN, HashimotoH, ShibuyaK, KawachiI, CampbellJC (2011) Population ageing and wellbeing: Lessons from Japan’s long-term care insurance policy. Lancet378, 1183–1192.
6.
NakanishiM, NakashimaT (2014) Features of the Japanese national dementia strategy in comparison with international dementia policies: How should a national dementia policy interact with the public health- and social-care systems?Alzheimers Dement10, 468–476.e3.
7.
Ministry of Health, Labour andWelfare. Statistics of Longterm Care Benefit Expenditures (in Japanese). http://www.mhlw.go.jp/toukei/list/45-1b.html. Last updated 28 November 2019, Accessed on October 27, 2020.
KuzuyaM, HasegawaJ, HirakawaY, EnokiH, IzawaS, HiroseT, IguchiA (2011) Impact of informal care levels on discontinuation of living at home in community-dwelling dependent elderly using various community-based services. Arch Gerontol Geriatr52, 127–132.
10.
KuzuyaM, EnokiH, HasegawaJ, IzawaS, HirakawaY, ShimokataH, AkihisaI (2011) Impact of caregiver burden on adverse health outcomes in community-dwelling dependent older care recipients. Am J Geriatr Psychiatry19, 382–391.
11.
AraiY, SugiuraM, WashioM, MiuraH, KudoK (2001) Caregiver depression predicts early discontinuation of care for disabled elderly at home. Psychiatry Clin Neurosci55, 379–382.
12.
CuijpersP (2005) Depressive disorders in caregivers of dementia patients: A systematic review. Aging Ment Health9, 325–330.
13.
JensenM, AgbataIN, CanavanM, McCarthyG (2015) Effectiveness of educational interventions for informal caregivers of individuals with dementia residing in the community: Systematic review and meta-analysis of randomised controlled trials. Int J Geriatr Psychiatry30, 130–143.
KesslerRC, AndrewsG, ColpeLJ, HiripiE, MroczekDK, NormandSL, WaltersEE, ZaslavskyAM (2002) Short screening scales to monitor population prevalences and trends in non-specific psychological distress. Psychol Med32, 959–976.
16.
FurukawaTA, KawakamiN, SaitohM, OnoY, NakaneY, NakamuraY, TachimoriH, IwataN, UdaH, NakaneH, WatanabeM, NaganumaY, HataY, KobayashiM, MiyakeY, TakeshimaT, KikkawaT (2008) The performance of the Japanese version of the K6 and K10 in the World Mental Health Survey Japan. Int J Methods Psychiatr Res17, 152–158.
17.
SakuraiK, NishiA, KondoK, YanagidaK, KawakamiN (2011) Screening performance of K6/K10 and other screening instruments for mood and anxiety disorders in Japan. Psychiatry Clin Neurosci65, 434–441.
18.
NagatomoI, AkasakiY, UchidaM, TominagaM, HashiguchiW, TakigawaM (1999) Gender of demented patients and specific family relationship of caregiver to patients influence mental fatigue and burdens on relatives as caregivers. Int J Geriatr Psychiatry14, 618–625.
19.
OuraA, WashioM, AraiY, IdeS, YamasakiR, WadaJ, KuwaharaY, MoriM (2007) Depression among caregivers of the frail elderly in Japan before and after the introduction of the Public Long-Term Care Insurance System. Z Gerontol Geriatr40, 112–118.
20.
HasegawaN, HashimotoM, KoyamaA, IshikawaT, YatabeY, HondaK, YuukiS, ArakiK, IkedaM (2014) Patient-related factors associated with depressive state in caregivers of patients with dementia at home. J Am Med Dir Assoc15, 371.e15–8.
21.
ShikimotoR, SadoM, NinomiyaA, YoshimuraK, IkedaB, BabaT, MimuraM (2018) Predictive factors associated with psychological distress of caregivers of people with dementia in Japan: A cross-sectional study. Int Psychogeriatr30, 1089–1098.
22.
LövheimH, SandmanPO, KarlssonS, GustafsonY (2009) Sex differences in the prevalence of behavioral and psychological symptoms of dementia. Int Psychogeriatr21, 469–475.
23.
KitamuraT, KitamuraM, HinoS, TanakaN, KurataK (2012) Gender differences in clinical manifestations and outcomes among hospitalized patients with behavioral and psychological symptoms of dementia. J Clin Psychiatry73, 1548–1554.
24.
HanJW, JeongH, ParkJY, KimTH, LeeDY, LeeDW, RyuSH, KimSK, YoonJC, JhooJ, KimJL, LeeSB, LeeJJ, KwakKP, KimBJ, ParkJH, KimKW (2014) Effects of social supports on burden in caregivers of people with dementia. Int Psychogeriatr26, 1639–1648.
25.
LiY, HuL, MaoX, ShenY, XueH, HouP, LiuY (2020) Health literacy, social support, and care ability for caregivers of dementia patients: Structural equation modeling. Geriatr Nurs41, 600–607.
26.
DamAE, de VugtME, KlinkenbergIP, VerheyFR, van BoxtelMP (2016) A systematic review of social support interventions for caregivers of people with dementia: Are they, doing what they promise?Maturitas85, 117–130.
27.
WalterE, PinquartM (2020) How effective are dementia caregiver interventions? An updated comprehensive meta-analysis. Gerontologist60, 609–619.
28.
DamAEH, BootsLMM, vanBoxtelMPJ, VerheyFRJ, de VugtME (2018) A mismatch between supply and demand of social support in dementia care: A qualitative study on the perspectives of spousal caregivers and their social network members. Int Psychogeriatr30, 881–892.
29.
AiharaY, KatoH, SugiyamaT, IshiK, GotoY (2020) Public attitudes towards people living with dementia: A cross-sectional study in urban Japan (innovative practice). Dementia (London)19, 438–446.
30.
VaingankarJA, ChongSA, AbdinE, PiccoL, JeyagurunathanA, ZhangY, SambasivamR, ChuaBY, NgLL, PrinceM, SubramaniamM (2016) Care participation and burden among informal caregivers of older adults with care needs and associations with dementia. Int Psychogeriatr28, 221–231.
31.
CarvalhoEB, NeriAL (2018) Time use by family caregivers of elderly with dementia: An integrative review. Rev Bras Enferm71, 893–904.
32.
KovalevaM, SpanglerS, ClevengerC, HepburnK (2018) Chronic stress, social isolation, and perceived loneliness in dementia caregivers. J Psychosoc Nurs Ment Health Serv56, 36–43.
33.
KitamuraT, TanimotoC, OeS, KitamuraM, HinoS (2019) Familial caregivers’ experiences with home-visit nursing for persons with dementia who live alone. Psychogeriatrics19, 3–9.
34.
NoguchiT, Nakagawa-SendaH, TamaiY, NishiyamaT, WatanabeM, KamiyaM, WakabayashiR, HosonoA, ShibataK, IchikawaM, EmaK, NagayaK, OkamotoN, TsujimuraS, FujitaH, KondoF, YamadaT, SuzukiS (2020) The association between family caregiver burden and subjective well-being and the moderating effect of social participation among Japanese adults: A cross-sectional study. Healthcare (Basel)8, 87.
35.
SchulzR, BeachSR (1999) Caregiving as a risk factor for mortality: The Caregiver Health Effects Study. JAMA282, 2215–2219.
36.
GorenA, MontgomeryW, Kahle-WrobleskiK, NakamuraT, UedaK (2016) Impact of caring for persons with Alzheimer’s disease or dementia on caregivers’ health outcomes: Findings from a community based survey in Japan. BMC Geriatr16, 122.
37.
BeachSR, SchulzR, WilliamsonGM, MillerLS, WeinerMF, LanceCE (2005) Risk factors for potentially harmful informal caregiver behavior. J Am Geriatr Soc53, 255–261.
38.
StallNM, KimSJ, HardacreKA, ShahPS, StrausSE, BronskillSE, LixLM, BellCM, RochonPA (2019) Association of informalcaregiver distress with health outcomes ofcommunity-dwelling dementia care recipients: A systematic review. J Am Geriatr Soc67, 609–617.
39.
KurodaK, ZhaoL, OkamotoE, TakatorigeT, ShinshoF, TataraK (1992) A comparative study of the characteristics and social backgrounds of frail and elderly persons at home, long-stay elderly hospital patients, and residents of welfare homes for the frail elderly (in Japanese). Nihon Koshu Eisei Zasshi39, 215–222.
40.
KishidaK, TanizakiS (2008) Determinants of urgency of nursing home placement (in Japanese). Nihon Koshu Eisei Zasshi55, 295–305.
41.
ToughH, BrinkhofMWG, SiegristJ, FeketeC, SwiSCI Study Group (2019) Social inequalities in the burden of care: A dyadic analysis in the caregiving partners of persons with a physical disability. Int J Equity Health19, 3.
42.
Statistics Bureau, Ministry of Internal Affairs and Communications, Government of Japan. Housing and Land Survey. https://www.stat.go.jp/data/jyutaku/index.html. Last updated 30 September 2019, Accessed on December 31, 2019.
43.
RobertS, HouseJS (1996) SES differentials in health by age and alternative indicators of SES. J Aging Health8, 359–388.
44.
TruzziA, ValenteL, EngelhardtE, LaksJ (2013) The association between caregiver distress and individual neuropsychiatric symptoms of dementia. Dement Neuropsychol7, 286–291.
