Local studies on family caregivers which can be found under ‘Part 10: Dementia Research’ are reviewed and discussed here. Among 33 local studies included, a wide range of domains of mental health of caregivers have been studied, including care burden (16 studies), depression/depressive symptoms (14 studies), distress caused by behavioural and psychological symptoms of dementia (4 studies), role overload (3 studies), caregiving strain (1 study), burnout (1 study), anticipatory grief (2 studies), positive aspects of caregiving (4 studies), quality of life (3 studies), life satisfaction (2 studies), meaning in life (1 study), psychological wellbeing (1 study), and overall wellbeing (1 study). However, only 1 study reports the physical health of caregivers. Descriptive statistics of care burden, depression/depressive symptoms, positive aspects of caregiving, quality of life and physical health of caregivers reported by some local studies were extracted and summarised. For care burden measured by the 22-item Zarit Burden Interview, its mean ranged from 24.4 to 43.6 (total sample size: 850), indicating a mild to moderate level of burden; for depression/depressive symptoms measured by the 20-item Center for Epidemiologic Studies Depression scale, the mean score ranged from 12.9 to 19.6 (total sample size: 1468), with a score of 16 or above suggesting significant or mild depressive symptomatology.

Table 8.4. Care burden, depression / depressive symptoms, positive aspects of caregiving, quality of life and physical health of family carers of people with dementia

Note:

1. For each measure, name of the instrument, number of items and possible range are presented.
2. For clinical trials, baseline scores of each group are presented.

References:

Au, A. (2015). Developing volunteer-assisted behavioral activation teleprograms to meet the needs of Chinese dementia caregivers. Clinical Gerontologist, 38(3), 190-202.

Au, A., Lau, K., Koo, S., Cheung, G., Pan, P., & Wong, M. (2009). The Effects of Informal Social Support on Depressive Symptoms and Life Satisfaction in Dementia Caregivers in Hong Kong. Hong Kong Journal of Psychiatry, 19(2).

Au, A., Wong, M., Leung, L., Leung, P., & Wong, A. (2014). Telephone-assisted pleasant-event scheduling to enhance well-being of caregivers of people with dementia: a randomised controlled trial. Hong Kong Medical Journal, 20(3 Suppl 3), 30-33.

Chan, W. C. H., Wong, B., Kwok, T., & Ho, F. (2017). Assessing grief of family caregivers of people with dementia: validation of the Chinese version of the Marwit–Meuser caregiver grief inventory. Health & social work, 42(3), 151-158.

Cheng, S. T., Fung, H. H., Chan, W. C., & Lam, L. C. W. (2016). Short-term effects of a gain-focused reappraisal intervention for dementia caregivers: a double-blind cluster-randomized controlled trial. The American Journal of Geriatric Psychiatry, 24(9), 740-750.

Cheng, S. T., Ip, I. N., & Kwok, T. (2013). Caregiver forgiveness is associated with less burden and potentially harmful behaviors. Aging Ment Health, 17(8), 930-934. doi:10.1080/13607863.2013.791662

Cheng, S. T., Lam, L. C., & Kwok, T. (2013). Neuropsychiatric symptom clusters of Alzheimer disease in Hong Kong Chinese: correlates with caregiver burden and depression. Am J Geriatr Psychiatry, 21(10), 1029-1037. doi:10.1016/j.jagp.2013.01.041

Cheng, S. T., Lam, L. C., Kwok, T., Ng, N. S., & Fung, A. W. (2013a). Self-efficacy is associated with less burden and more gains from behavioral problems of Alzheimer’s disease in Hong Kong Chinese caregivers. Gerontologist, 53(1), 71-80. doi:10.1093/geront/gns062

Cheung, K. S. L., Lau, B. H. P., Wong, P. W. C., Leung, A. Y. M., Lou, V. W. Q., Chan, G. M. Y., & Schulz, R. (2015). Multicomponent intervention on enhancing dementia caregiver well‐being and reducing behavioral problems among Hong Kong Chinese: A translational study based on REACH II. International Journal Of Geriatric Psychiatry, 30(5), 460-469.

Chien, W. T., & Lee, I. Y. (2011). Randomized controlled trial of a dementia care programme for families of home‐resided older people with dementia. Journal of advanced nursing, 67(4), 774-787.

Fung, W.-Y., & Chien, W.-T. (2002). The effectiveness of a mutual support group for family caregivers of a relative with dementia. Archives of psychiatric nursing, 16(3), 134-144.

Lau, B. H. P., & Cheng, C. (2017). Gratitude and coping among familial caregivers of persons with dementia. Aging & Mental Health, 21(4), 445-453.

Lau, B. H. P., Lou, V. W. Q., & Cheung, K. S. L. (2018). Exemplary Care among Chinese Dementia Familial Caregivers. Paper presented at the Healthcare.

Lou, V. W. Q., Kwan, C. W., Chong, M. L. A., & Chi, I. (2015). Associations between secondary caregivers’ supportive behavior and psychological distress of primary spousal caregivers of cognitively intact and impaired elders. Gerontologist, 55(4), 584-594.

Lou, V. W. Q., Lau, B. H. P., & Cheung, K. S. L. (2015). Positive aspects of caregiving (PAC): Scale validation among Chinese dementia caregivers (CG). Archives of Gerontology and Geriatrics, 60(2), 299-306.

Tang, J. Y., Ho, A. H., Luo, H., Wong, G. H., Lau, B. H., Lum, T. Y., & Cheung, K. S. (2016). Validating a Cantonese short version of the Zarit Burden Interview (CZBI-Short) for dementia caregivers. Aging Ment Health, 20(9), 996-1001. doi:10.1080/13607863.2015.1047323

Wong, C. S. C. (2018). Mediating effects of caregiver expressed emotion on health outcomes of caregivers for patients with dementia. (Doctor of Psychology), Alliant International University, Hong Kong.

Wong, P. K., Cheung, G., Fung, R., Koo, S., Sit, E., Pun, S. H., & Au, A. (2008). Patient and Caregiver Characteristics Associated with Depression in Dementia Caregivers. Journal Of Psychology In Chinese Societies, 9(2).

Yu, D. S. F., Kwok, T., Choy, J., & Kavanagh, D. J. (2016). Measuring the expressed emotion in Chinese family caregivers of persons with dementia: Validation of a Chinese version of the Family Attitude Scale. International journal of nursing studies, 55, 50-59.

Studies have examined the impact of unpaid care on the mental health of caregivers in India. For instance, a case control study conducted in Northern India examined the perceived stress experienced by caregivers of people with Alzheimer’s disease type dementia (Anand et al., 2016). The study reported that when compared to caregivers of individuals with chronic illness, caregivers of individuals with Alzheimer’s disease type dementia had higher amounts of perceived stress. Similarly, Pattanayak and colleagues (2010) also examined the experiences of carers of people with Alzheimer’s type dementia. The authors found that caregivers experienced a moderate level of burden, with female caregivers in particular perceiving higher levels of burden with respect to their physical and mental health. Another study conducted in rural Tamil Nadu reported prevalence of depression among informal caregivers of older adults as 10.6% (Brinda et al., 2014). Behavioural issues (Jathana, Latha and Bhandary, 2010; Prince et al., 2012; Shaji et al., 2009; Shaji et al., 2003), time/duration spent on caregiving (Brinda et al., 2014; Jathana, Latha and Bhandary, 2011; Prince et al., 2012) and functional disability (Brinda et al., 2014; Sinha et al., 2017) were commonly found to be associated with caregiver strain/burden across studies in India.

References:

Anand, K., Dhikav, V., Sachdeva, A., & Mishra, P. (2016). Perceived caregiver stress in Alzheimer′s disease and mild cognitive impairment: A case control study. Annals of Indian Academy of Neurology, 19(1), 58. https://doi.org/10.4103/0972-2327.167695

Brinda, E. M., Rajkumar, A. P., Enemark, U., Attermann, J., & Jacob, K. (2014). Cost and burdenof informal caregiving of dependent older people in a rural Indian community. BMC Health Services Research, 14(1), 207. https://doi.org/10.1186/1472-6963-14-207

Jathanna, R. P., KS, L., & Bhandary, P. V. (2011). Burden and coping in informal caregivers of persons with dementia: a cross sectional study. Online Journal of Health and Allied Sciences, 9(4).

Pattanayak, R. D., Jena, R., Tripathi, M., & Khandelwal, S. K. (2010). Assessment of burden in caregivers of Alzheimer’s disease from India. Asian Journal of Psychiatry, 3(3), 112–116. https://doi.org/10.1016/j.ajp.2010.06.002

Prince, M., Brodaty, H., Uwakwe, R., Acosta, D., Ferri, C. P., Guerra, M., … & Liu, Z. (2012). Strain and its correlates among carers of people with dementia in low-income and middle-income countries. A 10/66 Dementia Research Group population-based survey. International Journal of Geriatric Psychiatry, 27(7), 670–682. https://doi.org/10.1002/gps.2727

Shaji, K.S., George, R.K., Prince, M.J., Jacob, K.S., (2009). Behavioral symptoms and caregiver burden in dementia. Indian J. Psychiatry 51, 45–9. https://doi.org/10.4103/0019-5545.44905

Shaji, K. S., Smitha, K., Lal, K. P., Prince, M. J. (2003). Caregivers of people with Alzheimer’s disease: a qualitative study from the Indian 10/66 Dementia Research Network. International Journal of Geriatric Psychiatry, 18(1), 1–6.

Sinha, P., Desai, N. G., Prakash, O., Kushwaha, S., & Tripathi, C. B. (2017). Caregiver burden in Alzheimer-type dementia and psychosis: A comparative study from India. Asian journal of psychiatry, 26, 86-91.

Tatisina and Sari (2017) report that where family members cannot adapt to the caregiver role, they experience stress, which can be expressed through fatigue that does not go away despite resting, alcohol or drug use, social isolation, lack of attention  of  carers’ own needs, inability and unwillingness to accept help from other people, feeling unappreciated, anger, depression, anxiety, and feeling guilty because he/she did not live up to their own expectations of the carer role (Yuniati, 2017). The complaints which were expressed by families included feeling tired, experience back pain, pain in the limbs, sleep disruption, headache, muscle strain, and dizzyness. The families also reported feelings of anger, impatience, stress, sadness, worry, and guilt because sometimes they mistreated the older person with dementia.

References:

Tatisina, C. M., & Sari, M. (2017). The Correlation Between Family Burden And Giving Care for Dementia Elderly at Leihitu Sub-District , Central Maluku , Indonesia. 2(3), 41–46.

Yuniati, F. (2017). Pengalaman Caregiver dalam Merawat Lanjut Usia dengan Penurunan Daya Ingat. Jurnal Bahana Kesehatan Masarakat, 1(1), 27–42.

Although not documented in Kenya, caregivers to people with dementia are often called “invisible second patients” due to the high rates of psychological morbidity and physical ill-health (Brodaty & Donkin, 2009). Caring for a person with dementia is particularly associated with reduced self-efficacy, quality of life, mental health (including depression and anxiety), physiological changes such as irregular immune and metabolic function, cardiovascular reactivity, and increased stress hormones e.g., cortisol which may contribute to impaired cognitive function, risk of developing obesity, hyperinsulinemia, and inflammation. In addition, some carers report physical exertions due to little time for exercise and preparation of healthy meals (Cuijpers, 2005; Richardson et al., 2013; Sörensen et al., 2006).

References:

Brodaty, H., & Donkin, M. (2009). Family caregivers of people with dementia. Dialogues in Clinical Neuroscience, 11(2), 217-228. https://doi.org/10.31887/DCNS.2009.11.2/hbrodaty

Cuijpers, P. (2005). Depressive disorders in caregivers of dementia patients: a systematic review. Aging & Mental Health, 9(4), 325–330. https://doi.org/10.1080/13607860500090078

Richardson, T. J., Lee, S. J., Berg-Weger, M., & Grossberg, G. T. (2013). Caregiver health: health of caregivers of Alzheimer’s and other dementia patients. Current Psychiatry Reports, 15(7), 367. https://doi.org/10.1007/s11920-013-0367-2

Sörensen, S., Duberstein, P., Gill, D., & Pinquart, M. (2006). Dementia care: mental health effects, intervention strategies, and clinical implications. The Lancet Neurology, 5(11), 961–973.  https://doi.org/10.1016/S1474-4422(06)70599-3

No specific information is available.

Caring for a person living with dementia has been linked to increased stress (e.g., emotional, financial) (Gurayah, 2015), high levels of care burden (Pretorius et al., 2009), and that an increase in social-/relational conflict and stressors may result in the declining physical health of the caregiver (Gurayah, 2015).

References:

Gurayah, T. (2015). Caregiving for people with dementia in a rural context in South Africa. South African Family Practice, 57(3), 194–197. https://doi.org/10.1080/20786190.2014.976946

Pretorius, C., Walker, S., & Heyns, P. M. (2009). Sense of coherence amongst male caregivers in dementia: A South African perspective. Dementia, 8(1), 79–94. https://doi.org/10.1177/1471301208099046