East Asian Arch Psychiatry 2010;20:163-8

ORIGINAL ARTICLE

Dr Wai-chi Chan, MRCPsych, FHKAM (Psychiatry), Department of Old Age Psychiatry, Castle Peak Hospital, Hong Kong SAR, China.
Dr Chee Ng, FRANZCP, MBBS, MMed, MD, Department of Psychiatry, The University of Melbourne, Victoria, Australia.
Ms Cycbie Ching-man Mok, MSc Health Care (OT), Department of Occupational Therapy, Castle Peak Hospital, Hong Kong SAR, China.
Ms Fanny Lai-fun Wong, BA, MBA, MSc, The Hong Kong Society for Rehabilitation Community Rehabilitation Network, Hong Kong SAR, China.
Mr Shu-leung Pang, MSc (ANP), Department of General Adult Psychiatry, Castle Peak Hospital, Hong Kong SAR, China.
Dr Helen Fung-kum Chiu, FRCPsych, FHKAM (Psychiatry), Department of Psychiatry, Chinese University of Hong Kong, Hong Kong SAR, China.

Address for correspondence: Dr Wai-chi Chan, Castle Peak Hospital, 15 Tsing Chung Koon Road, Tuen Mun, Hong Kong SAR, China.
Tel: (852) 2456 7111; Fax: (852) 2949 7296; Email: chanwc1@ha.org.hk

Submitted: 22 February 2010; Accepted: 18 June 2010

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Introduction

In line with global trends, the average age of the population in Hong Kong has been increasing rapidly. By mid-2009, 12.8% of the local population were 65 years or over,¹ which was possibly the highest proportion in South-East Asia. Since the prevalence of dementia increases exponentially with age,² the number of persons suffering from dementia rises with the changing demographics. As reported in a recent population-based study in Hong Kong,³ the prevalence of dementia among persons aged 70 years or above was as high as 9.3%.

It has long been recognised that the impact of dementia goes far beyond the affected individuals. Numerous studies have highlighted its deleterious psychological, physiological and financial effects on family caregivers^4,5 as well as its enormous socioeconomic costs. Alzheimer’s and other types of dementia now constitute the fourth leading cause of disease burdens in high-income countries, accounting for 3.6% of total disability-adjusted life years.⁶ Furthermore, the direct health care costs are substantial in both developing and developed countries.^7,8

Despite its global importance, most research findings on caregiving experience in dementia are based on western populations from the developed world. Assumptions about the nature of the caregiving experience in dementia based on overseas data may not be appropriate for another culture or population. Evidence shows that older Asians are more likely to consider dementia as part of the ageing process and regard that care for the elderly ought to be provided by families or friends.⁹ In Hong Kong, the prevailing cultural values and societal practices such as strong traditions of filial piety¹⁰ may further modify the caregiving experience among local inhabitants.

Understanding the caregiving experience in the local context is important when implementing effective carer interventions that are now available. Strategies including psychoeducational intervention and cognitive behavioural therapy are effective in alleviating the caregiver burden and depression, and improving subjective well-being, perceived satisfaction, ability / knowledge among caregivers, whilst also moderating care receiver symptoms.¹¹ Apart from non- pharmacological interventions, emerging evidence also shows the effectiveness of pharmacological treatments in relieving caregiver burden.¹²

Support for caregivers is the foundation for effective dementia care, because most caregiving for persons with dementia is provided by informal carers. In Hong Kong, however, the situations of caregivers for the elderly with dementia have not been adequately studied. Therefore the aim of the study was to conduct a qualitative study to assess the experience and needs of such local caregivers and suggest appropriate interventional strategies.

Methods

Study Design

This qualitative study conducted over 4 months in 2004, used focus group interviews to explore the experience and needs of caregivers of Chinese subjects with dementia in Hong Kong. Relevant institutional Ethics Committees approved the study.

Study Population and Procedures

The study utilised focus group discussions, which are useful for revealing participants’ feeling and experiences,¹³ and aimed to explore the lived experience of caregivers of persons with dementia in Hong Kong. Group discussions not only have the advantage of revealing similarities and diversity of experiences among participants, but also facilitate exploration of their own and alternative views in depth, as they react with others in the group. Focus group participants were recruited from the Community Rehabilitation Network (CRN) of the Hong Kong Society for Rehabilitation, which provides psychosocial support to people with chronic physical and psychiatric health problems and their carers. Subjects were selected based on the following criteria: (a) the caregivers were informal, i.e. unpaid family members who offered a substantial amount of care for older persons with dementia, and (b) they were able to communicate in Cantonese.

Informal caregivers of persons with dementia who met these eligibility criteria were invited to participate after information about the study was given over the telephone. Among 55 carers who were approached, 27 consented to participate. Reasons for non-participation included: caregiving responsibilities, domestic commitments, poor mobility, and long distances to travel. Focus group participants were interviewed at the CRN Tuen Mun centre. The interviews, which lasted for 120 to 150 minutes each, were tape-recorded and transcribed verbatim with the permission of each participant.

Interview Topic Guide

A topic guide consisting of broadly focused open-ended questions was designed based on the framework drawn up by Pearlin et al.¹⁴ This model divides caregiving experiences into 4 domains: background and contextual factors; stressors; mediators of stress; and outcomes. The content and format of topic guide were reviewed and supplemented by an expert panel comprising health care professionals from different disciplines. Topics were revised regularly as more information and insight into this issues were obtained during the study.

In addition, socio-demographic data about the caregivers and care recipients were collected. Caregivers also completed a checklist of common experiences related to caregiving for persons with dementia, that had been previously identified in literature. This was done on completion of the focus group interviews, so as to avoid bias from exposure to checklist questions.

Data Analysis

Data analysis was conducted using the phenomenology approach described by Colaizzi.¹⁵ First, following transcription, each focus group interview protocol was read to obtain a holistic impression. Second, significant statements were extracted from the protocols. Third, formulated meanings were spelt out from each significant statement. Fourth, the above were repeated for each description and aggregate formulated meanings were organised into clusters / themes. These clusters / themes were referred back to the original protocols in order to validate them. Discrepancies among clusters were also recorded. Fifth, the results were then integrated into an exhaustive description of the investigated topic. Sixth, fundamental structure was identified from the exhaustive description of the investigated phenomenon. The final validating step was achieved by returning to participants to ask for comments on the findings.

The credibility of the analysis was supported by requesting participants to provide negative descriptions of the phenomena (e.g. “Can you describe a situation in which you would feel that you did not have stress in caregiving at all?”). In addition, research team members returned to the data repeatedly in order to identify and discuss alternative explanations at length. The transdisciplinary composition of the team fostered the formation and exploration of alternative explanations. Competing explanations were discussed until the team reached agreement.

Results

Description of the Participants

Among the 27 informal caregivers, 10 were spouses of care recipients (5 wives and 5 husbands), and 17 were their children (16 daughters and 1 son). Their ages ranged from 36 to 82 (median, 52) years. They provided care for their mothers (n = 15), fathers (n = 2), wives (n = 5), and husbands (n = 5) respectively. The age of the care recipients ranged from 66 to 98 (median, 78) years. There was a female preponderance in both carers and their care recipients. The female-to-male ratio for caregivers was 3.5:1, and for care recipients it was 2.9:1.

Most of the caregivers had had only a basic education. Three (11%) had received no formal education, 10 (37%) finished primary school, and 12 (44%) finished secondary school; only 2 (7%) had received tertiary education. In the latest Hong Kong Population By-census,¹⁶ the respective percentages of the population aged 15 years and over who had received primary, secondary and tertiary education were 18%, 52%, and 15%. Hence, the educational attainment of our focus group participants was below the average for Hong Kong.

About a third of carers did not disclose their incomes to the investigators. Of those who provided such information, around half were recipients of the Comprehensive Social Security Assistance Scheme. The majority of the families earned HK$10,000 / month or less per household, which was lower than the median household income for Hong Kong families (HK$15,500 in the year 2004).

Caregivers had provided daily care for their family members for a mean (range) duration of 64 (12-168) months. More than half of them were residing with their care recipients and the remainder paid frequent visits.

Five key themes around the personal experiences of carers of persons with dementia emerged from the focus group discussions. These are outlined below.

Confusion Regarding Diagnosis

Although all caregivers agreed that their family members were suffering from a health condition, they had significantly diverse views about its nature. One carer insisted that his wife was suffering from schizophrenia while another coined a new Chinese terminology ‘善忘症’ (which literally means ‘an illness of forgetfulness’) to describe the problems that her father suffered. Their comments suggested a lack of information given to caregivers and confusion regarding the health problem. Especially for those who had no prior encounter or knowledge about mental health problems, the comments may be related to the lack of acceptance of mental illnesses and its associated stigma. A daughter protested, “I do not think my father is having a psychiatric problem. All he has is ‘善忘症’. He does not beat up anybody. He is not aggressive at all. I believe persons with mental illnesses should be irritable and act aggressively.”

Others, however, welcomed the diagnosis of dementia because they were relieved when the diagnoses were confirmed by doctors, rather than relying on their own opinion. It also reinforced the notion that in Hong Kong, the opinions of health care professionals were highly respected by the public, which may have implications for the implementation of caregiver interventions.

Emotional Impact

The emotional burden experienced by family members was the strongest theme that emerged from the focus groups. As shown in the checklist of caregiving experiences, 70% of the participants reported psychological distress and 56% reported disturbed mood. A wide array of negative emotional responses were identified, notably grief, sadness, anxiety, anger, guilt, blame, fear, and embarrassment. Nevertheless, several carers also reported the positive aspects of caregiving, which included: companionship, adding meaning to life, and having opportunities to care for their close ones. A wife recalled her poignant feelings. She said, “I find it very painful to look after my husband. I cannot tell you where the pain is …what it is like … I really don’t know how to describe it. But the pain is always there.” A husband said, “I am so ambivalent and distressed. On one hand, I think it’s too cruel to send my wife to a nursing home. I feel guilty towards her and blame myself for having such thoughts. On the other hand, I find it too exhausting to look after her all on my own. Caregiving is really depressing.”

Difficulty in Coping with the Care Recipient’s Behaviours

Caregivers gave a detailed account of various behavioural and psychological problems they encountered during caregiving of their family members. These comprised a wide range of symptoms but agitation, irritability, aggression, obstinacy, withdrawal, insomnia and abnormal perception were the most common. A wife said miserably, “My husband often scolded me fiercely with foul language. One morning, he suddenly sprinkled water at me for no reason!”

Provision of Care Recipient’s Daily Care Needs is Demanding

The functional deficits associated with dementia increased as the illness progressed. Most caregivers found it very demanding to help their family members with their activities of daily living. Provision of care 24 hours a day all year- round constituted one of the major sources of burden.

Conflicts Among Social Roles

Caregiving posed a significant strain on carers as it frequently clashed with other social roles. In the questionnaire, 37% of respondents indicated problems with their social life, 26% with their relationships with other family members, and 15% with their jobs. Some caregivers described major conflicts between their different social roles. For example, several were unable to have regular work because they had to attend to the care recipients almost round the clock. A carer used the term ‘shattered family’ to describe the crisis in relationships among family members. Lack of support from other family members, including the grown- up children who usually lived separately from the persons with dementia was another significant problem. A daughter sighed, “It was extremely difficult at the very beginning. I always felt lonely, as no one in my family was willing to give me a hand. My husband scolded my mother …oh no, not only my husband …but also everybody at home. All of them hated her.”

Perspectives on Caregiving and Services

Different caregiving experiences during the course of dementia were reported. Caregivers of those with mild-to- moderate dementia expressed more psychosocial distress than those of persons with more severe disease. The former commonly attributed their burden to the behavioural and psychological symptoms of dementia (BPSD) exhibited by the care recipients. For some, BPSD had a significant deleterious effect on their quality of life. As the disease progressed, the focus of care shifted to more basic daily care. Even though offering personal care to relatives was both labour-intensive and time-consuming, carers of persons with severe dementia accepted their role better. In some cases, increasing severity also resulted in less personal burden due to increased family support and fewer complaints from others about the carers or the care recipients.

Caregivers’ perceptions about the usefulness of social services also differed across the spectrum of dementia. Carers of persons with milder dementia found mutual support groups particularly helpful to cope with their distress. They also preferred day care facilities to other support services, such as home care and respite services. While carers looking after persons with late-stage dementia generally benefited from the community-based services they received, most considered residential services as the best long-term care arrangement.

Regardless of the stage of illness, all carers agreed that information leaflets, audiovisual materials, and problem- oriented skills training programmes were very practical and should be expanded both in scope and frequency. They also found the availability of an accessible ‘resource person’ (nurse, social worker, occupational therapist, or doctor) quite helpful, so that they could obtain information and advice about specific aspects of caregiving. In particular, it was useful for the resource person to play a direct service provider role, and when the need arose, makes referrals to appropriate agencies. In summary, caregivers expressed a need for a ‘one-stop’ service with the resource person as the contact point.

In terms of the caregiving experience, there was little difference between spousal and non-spousal caregivers. However, female carers expressed higher levels of concern towards care recipients than their male counterparts. Since they had high expectations of themselves to be competent, they endured significantly more stress than males undertaking the same responsibilities. However, this apparent difference could be due to a self-reporting gender bias.

Discussion

Informal carers constitute the backbone of dementia caregiving. To support carers it is therefore important to understand their experiences and needs from services provided by health and social care professionals. As shown in the present study, in Hong Kong a caregiving career is as demanding and challenging as reported in other developed communities. The results echo earlier findings about the negative consequences of dementia caregiving being similar in Shanghai and the US.¹⁷ ‘Confusion regarding diagnosis’, ‘Emotional impact’, ‘Difficulty in coping with the care recipient’s behaviours’, ‘Provision of care recipient’s daily care needs is demanding’, and ‘Conflicts among social roles’ were the key themes pervasive across all the focus groups.

While pervasive themes could be identified across focus groups, their caregiving experience changed as dementia progressed. This was probably related to variable cognitive deterioration, increasing behavioural symptoms, and decline in functional status at different stages of dementia.^18,19 In our study moreover, female caregivers expressed more stress than their male counterparts, which is in line with the relationship between gender and caregiver stress reported in the literature.²⁰ Factors like social expectations may have exposed female caregivers to extra stress.

Despite carrying a significant burden, recognition of caregiver needs by families was often poor. Participants reported receiving inadequate assistance and emotional support from relatives, and even experienced tension in their inter-family relationships. The findings of this study do not support the general concept that Chinese caregivers in Hong Kong are less burdened than those in the West, due to better support networks in traditional Chinese societies. This may be partially attributed to changing traditions and cultural values within a westernised Asian city like Hong Kong. For instance in the current generation, filial piety, once regarded as the most fundamental value in traditional Chinese culture, has become modified or even eroded.²¹ The situation in Hong Kong could be further aggravated with the gradual replacement of extended families by nuclear families, making live-in caregiving increasingly difficult.

A number of carers nevertheless reported positive experiences and considered caregiving to be rewarding and in some cases helped improve the relationships among family members. However, important issues like the stigma associated with dementia were not discussed in-depth in the current study and warrants further research.

Implications for Clinical Practice and Health Policies

The findings of this study and feedback from caregivers in general can provide valuable information to improve services for caregivers of persons with dementia. As reported, significant carer strain was associated with ‘not knowing’ what went wrong with one’s beloved family member. Some participants suggested that confirmation of the diagnosis by health care professionals brought relief. Early diagnosis and clear communication are therefore vital to improve understanding of the disorder. The diagnosis should be explained in everyday language, and supplemented with written and / or audiovisual materials if possible. With the advent of web-based sources of information, caregivers with access to the Internet could use this technology to equip themselves with knowledge and skills relevant to dementia.

Appointing a ‘resource person’ for each person with dementia may be one of the most useful service enhancements to improve assistance. An accessible health care / social service professional able to provide practical information and help could contribute to the relief of carer burdens and prevent ‘burnout’. Services such as caregiver support groups, caregiver training, and available community and residential care should be accessible. Preferably, these services should be tailor-made to suit the needs of persons at different stages of dementia and their caregivers and families.

With the rapidly ageing population in developed Asian societies, governments and health administrators are struggling to meet the growing costs of health care and other services needed for elderly citizens with dementia and related health problems. Greater investment in carer support services is one of the most viable strategies to reduce the enormous impact of health and economic burden due to dementia. Ideally, a coordinated range of community-based support services would meet the individual needs of families and carers willing to care for persons with dementia. In order to ensure the availability of appropriate services, health policy and service planners should reinforce close collaboration and service integration between health care and social sectors.

Limitations

While qualitative research as conducted in the current study is a good approach to assess the experience of a particular group of health consumers, it is difficult to estimate its generalisability. Despite this uncertainty, the perspectives of the carers in this study appeared fairly typical of Chinese populations as they were in keeping with those reported in other Chinese communities.^17,22 In addition, to ensure the validity of the study, member checking was conducted. However, the fact that some researchers had actively participated in the voluntary services of CRN might prevent the participants from adopting a critical stance. This was partially overcome by selecting the investigator least familiar with the participants as the moderator of each session. Another limitation of this study was that all interviews were conducted in Chinese but the report was translated and compiled in English. Some of the original semantic richness might have been lost in the process of translation.

Conclusions

As our population continues to age, family caregivers are faced with increasing demands. Understanding their experience can help service providers design effective interventions to alleviate their burden. The current study explored the essence of carer experiences by investigating subjective phenomena through the personal perspective of those having direct encounters. Our findings highlight the sources of caregiver strain and a number of the unmet needs of local Chinese caregivers in Hong Kong. These may be useful in guiding the direction of service developments and policies.

As suggested by Hervey and Ramsay,²³ informal caregivers can be valuable resources both for persons with dementia and professional caregivers, and can serve as partners in caregiving. Only when their needs are identified and supported can we turn caregiving from a journey filled with difficulties and setbacks to a positive and rewarding experience.

Acknowledgements

We are enormously grateful to Prof Byron Good of Harvard Medical School and Dr Alex Cohen of London School of Hygiene and Tropical Medicine, who gave invaluable support and guidance to this project. We are also indebted to Ms Kennis Chan for her assistance in preparing the transcripts. Above all, we would like to thank the caregivers for their participation in discussion with great openness.

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