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Keywords:

  • caregiver;
  • dementia care;
  • long-term care insurance

INFORMAL NETWORK: TRADITIONAL WAY OF PROVIDING CARE FOR THE IMPAIRED ELDERLY

  1. Top of page
  2. INFORMAL NETWORK: TRADITIONAL WAY OF PROVIDING CARE FOR THE IMPAIRED ELDERLY
  3. FORMAL NETWORK: LONG-TERM CARE INSURANCE
  4. REFERENCES

Informal care in Japan is unique for two reasons.1 First, there has been tremendous social pressure on the family, particularly on female members, to provide care. This is partly due to Confucianism, where the virtue of filial piety has been strongly stressed, if not enshrined. Second, a caregiving role used to be a legal obligation for the eldest son of the family. Before World War II, Japanese civil law stipulated that the eldest son would inherit the assets of the family; in turn, the entire responsibility of caring for the parents fell to the wife of the eldest son, the daughter-in-law.

The government made good use of this Confucian-influenced norm, which has continued to be influential in Japanese society even after World War II. Indeed, the prime minister of Japan in 1979 strongly reiterated the importance of ‘Japanese-style welfare’, in which self-help, tolerance, and the solidarity of the family are the priorities. The government even stressed that the ‘European-style welfare state’ might discourage the prevailing notion of caregiving as a family duty. Under these circumstances, it was not surprising that the government was reluctant to provide social services. The development of domiciliary care in Japan has thus lagged far behind that in the UK or Scandinavian countries. Social services that were available had to have municipal approval after means testing.

An increase in the number of impaired elderly people and a concomitant decrease in the capacity of informal care (partly due to the increasing prevalence of the ‘nuclear family’ and career-oriented women) have now made ‘caregivers’ burden’ a social issue.2–4

Moreover, the overemphasis on family values and self-help at the policy level has enhanced the stigmatization of social services in Japan. Indeed, there has been a persistent notion that welfare is for those who have slipped out of the ‘normal’ social net where self-help and/or informal help can be provided. In turn, social services have been targeted at those who lack social support and have low incomes. Interestingly, 20% of the elderly surveyed by a government agency stated that caregivers should not use public services. Another 36% held that only a minimum number of public services should be used, and only when caregivers are about to reach burnout.5

In a rural area in Japan, 42% of healthy elderly people also declared that they would not wish their family to turn to social services even if they were to develop dementia.6 In addition, family caregivers overconcerned about others’ opinions were five times less likely to use social services in a rural township in northern Japan.7

Overall, care based on the informal network in Japan may be characterized as follows: ample informal care based on Confucianism and family structure; and long-standing government indifference in providing sufficient and well-accepted social services. However, the informal network is no longer able to cope with the rapid increase in the number of frail elderly people, including those with dementia. This has resulted in the increasing burden on caregivers. The government thus launched the long-term care insurance scheme to establish a formal network of care for frail elderly people, including those with dementia.

FORMAL NETWORK: LONG-TERM CARE INSURANCE

  1. Top of page
  2. INFORMAL NETWORK: TRADITIONAL WAY OF PROVIDING CARE FOR THE IMPAIRED ELDERLY
  3. FORMAL NETWORK: LONG-TERM CARE INSURANCE
  4. REFERENCES

The long-term care (LTC) insurance scheme ostensibly pays for institutional and home-based care, not only for those aged 65 years or more who require care, but even for people over 40 years with ‘age-related’ diseases such as dementia.8 Under the scheme, each municipal government is a deemed insurer, and the level of services is determined by the clients’ degree of impairment. The extent of informal care available to clients is no longer taken into account when eligibility is determined. This has been regarded as a historic departure from conventional social policy in Japan.9

As shown in Figure 1, the LTC system has demonstrably changed the attitudes of caregivers. After only 1 year under the new program, many caregivers came to believe that society must look after the elderly.10 In the short space of a year, there was an obvious shift from the idea that the family must provide care for the aged, to the previously unheard-of notion that society must shoulder this burden in the world's fastest-aging population.10,11

image

Figure 1. Changes in caregivers’ attitudes regarding who should care for the impaired elderly.

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Under the LTC insurance scheme, services are allocated based on the government-certified disability index (GCDI) (Yokaigodo). To calculate the GCDI, a care manager who is assigned to a particular client conducts an assessment of the client's disability, using a 79-item tool developed by the Ministry of Health, Labor and Welfare.8 These 79 items mainly deal with activities of daily living (ADL), with less emphasis on the cognition and behavioral problems presented by the client. A government computer program then uses an algorithm to calculate the client's GCDI score from the data gathered by the care manager. Following the calculation of this score, a so-called ‘certification committee’, consisting of visiting nurses, physicians and, in some cases, a psychiatrist, reviews the computer-calculated GCDI score. The committee can accept or change the score, taking into account a report submitted by the client's primary care physician. The final GCDI scores range from 0 to 6, and indicate the amount that can be spent on services for a particular client with a given score. Once this review has been completed, a care management agency in the area steps in to provide the services indicated by the GCDI score.

In order to compare the efficiency of care delivery for the physically disabled elderly with that for the elderly with dementia, we present the following two examples. In the case of the physically disabled elderly—for example, the elderly with stroke—they are treated by specialists at the acute stage, as shown in Figure 2. Then, when discharged from a hospital, they are treated by primary care physicians. Alternatively, the physically disabled elderly could apply to the municipal government for social services under the LTC insurance scheme. After the degree of their physical disability is assessed, they can find out the number and type of services they would receive by consulting the care managers. In the case of the physically disabled elderly, this care network is operating fairly well, particularly after the implementation of the LTC insurance scheme.

image

Figure 2. Care network for the physically disabled elderly.

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In contrast, there are quite a few problems with the care network for the elderly with dementia, as shown in Figure 3. First, there are problems in obtaining medical care for the elderly with dementia. For example, family caregivers take 1–2 years to contact primary care physicians after they notice ‘something wrong with their elderly’ (Fig. 3-1). Then, it usually takes another 1–2 years after the primary care physicians are consulted for the caregivers to contact the specialists; that is, psychiatrists (Fig. 3-2).

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Figure 3. Care network for the elderly with dementia.

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To investigate why primary care physicians are not contacted immediately when a problem is detected, in-depth interviews were conducted with family caregivers. First, the idea of their loved ones having ‘dementia’ never occurred to some family caregivers. They simply do not know what to do when they see ‘some sort of change in the personality’ or ability—for example, in managing finances—of their loved ones (Fig. 3-1). Second, patients themselves often do not want to go and see a doctor. Primary care physicians and specialists often have difficulty working together as well. Primary care physicians are not always aware of the symptoms of dementia in its early stages (Fig. 3-2) and there is the lack of a referral system from primary care physicians to specialists (Fig. 3-2). Third, the family care burden is heavy, as measured by the Zarit Caregiver Burden Interview (J-ZBI_8) (Table 1).

Table 1.  The shortened Japanese version of the Zarit Caregiver Burden Interview (J-ZBI_8)
  • J-ZBI_8 Personal Strain;

  • J-ZBI_8 Role Strain.

1. Do you feel embarrassed over your relative's behavior?
 0. Never 1. Rarely2. Sometimes3. Quite frequently4. Nearly always
2. Do you feel angry when you are around your relative?
 0. Never1. Rarely2. Sometimes3. Quite frequently4. Nearly always
3. Do you feel that your relative currently affects your relationship with other family members or friends in a negative way?
 0. Never1. Rarely2. Sometimes3. Quite frequently4. Nearly always
4. Do you feel strained when you are around your relative?
 0. Never1. Rarely2. Sometimes3. Quite frequently4. Nearly always
5. Do you feel that your social life has suffered because you are caring for your relative?
 0. Never1. Rarely2. Sometimes3. Quite frequently4. Nearly always
6. Do you feel uncomfortable about having friends over because of your relative?
 0. Never1. Rarely2. Sometimes3. Quite frequently4. Nearly always
7. Do you wish you could just leave the care of your relative to someone else?
 0. Never1. Rarely2. Sometimes3. Quite frequently4. Nearly always
8. Do you feel uncertain about what to do about your relative?
 0. Never1. Rarely2. Sometimes3. Quite frequently4. Nearly always

It has also been revealed that there are two reasons why family caregivers do not contact specialists. First, family caregivers are hesitant in obtaining assistance from psychiatrists because of the stigma attached to mental illness in Japan (Fig. 3-1). Second, some family caregivers do not wish to know the truth; that is, that their loved ones have ‘dementia’.

Since the LTC insurance scheme has been in place, more patients have been entitled to receive services, and the awareness of the benefits of patients receiving social services has increased among psychiatrists. However, the LTC insurance scheme is still a ‘work in progress’ in terms of care for dementia patients. For example, there are few domiciliary services which are targeted at the elderly with dementia under the LTC insurance scheme (Fig. 3-3). There are also few institutes to which the elderly with severe behavioral and psychological symptoms of dementia (BPSD) can be admitted so as to provide some respite for family caregivers (Fig. 3-4).

Our study investigated whether the GCDI scores under the LTC insurance program adequately reflected the needs of people with dementia of Alzheimer's type (DAT) and vascular-type dementia (VaD). The results show that the GCDI score for DAT patients is lower than that for VaD patients, indicating that DAT patients are classified as ‘less disabled’ based on their GCDI score compared to VaD patients.12 Since the number of care services patients can access under the LTC insurance scheme is determined solely by the GCDI score, it appears that patients with DAT in the study were allowed fewer care  services  despite  the  fact  that  the  severity  of their dementia was the same as that of VaD patients (Fig. 3-5).

The following measures could be implemented to improve the dementia care system. First, it is necessary to ‘educate’ not only the caregivers, but also the general public. This can be done by providing seminars on the early symptoms of dementia and what to do if a loved one shows symptoms. Second, primary care physicians should be trained to look for early warning signs of dementia. Third, assessment of the ‘frail’ elderly should be improved. That is to say, the severity of behavioral disturbances should be taken into account when the ‘frail’ elderly are assessed under the LTC insurance scheme. Finally, more care services specializing in dementia care should be set up.

REFERENCES

  1. Top of page
  2. INFORMAL NETWORK: TRADITIONAL WAY OF PROVIDING CARE FOR THE IMPAIRED ELDERLY
  3. FORMAL NETWORK: LONG-TERM CARE INSURANCE
  4. REFERENCES
  • 1
    Arai Y. Insurance for long-term care planned in Japan. Lancet 1997; 350: 1831.
  • 2
    Arai Y, Kudo K, Hosokawa T et al. Reliability and validity of the Japanese version of the Zarit caregiver burden interview. Psychiatry Clin Neurosci 1997; 51: 281287.
  • 3
    Arai Y, Washio M. Burden felt by family caring for the elderly members needing care in southern Japan. Aging Ment Health 1999; 3: 158164.
  • 4
    Arai Y, Zarit SH, Sugiura M et al. Patterns of outcome of caregiving for the impaired elderly: a longitudinal study in rural Japan. Aging Ment Health 2002; 6: 3946.
  • 5
    Office of Management and Coordination Agency. Attitude Towards Service Use. Statistics on Aging Society. Tokyo: Publication Office for the Ministry of Finance, 1997; 153.
  • 6
    Arai Y, Washio M, Miura H et al. Dementia care in Japan: insurance for long-term care legislation in Japan. Int J Geriatr Psychiatry 1998; 13: 568574.
  • 7
    Arai Y, Sugiura M, Miura H et al. Undue concern for others’ opinions deters caregivers of impaired elderly from using public services in rural Japan. Int J Geriatr Psychiatry 2000; 15: 961968.
  • 8
    Ministry of Health, Labor and Welfare. Long Term Care Insurance.[2002]. Available from: http://www.mhlw.go.jp/topics/kaigo/index.html (in Japanese).
  • 9
    Arai Y, Ikegami N. How will Japan cope with the impending surge of dementia? In: WimoA, JönssonB, KarlsonG, WinbladA, eds. Health Economics of Dementia. Chichester: John Wiley & Sons, 1998; 278284.
  • 10
    Arai Y, Ueda T. Paradox revisited: still no direct connection between hours of care and caregiver burden. Int J Geriatr Psychiatry 2003; 18: 188189.
  • 11
    Arai Y. Japan's new long-term care insurance. Lancet 2001; 357: 1713.
  • 12
    Arai Y, Zarit SH, Kumamoto K et al. Are there inequities in the assessment of dementia under Japan's LTC insurance system? Int J Geriatr Psychiatry 2003; 18: 346352.