DESK REVIEWS | 08.02.04. Please describe the documented impacts on the caregiver of provision of unpaid care to people with dementia

DESK REVIEW | 08.02.04. Please describe the documented impacts on the caregiver of provision of unpaid care to people with dementia

We have identified one peer-reviewed study on the burden carers of people with dementia experience (Rosas-Carrasco et al., 2014). As in other studies on informal care in Mexico, they found that providing care for someone with dementia has a negative impact by increasing risk of burden. Results showed that variables relating to the person with dementia have a greater impact on caregiver burden than caregiver-associated variables. Specifically, dysexecutive syndrome (disruption of executive function, closely related to frontal lobe damage, encompasses cognitive, emotional, and behavioural symptoms), sleep disorders and low educational attainment in the person with dementia were associated to a higher level of caregiver burden, while for the carers, the only factor that showed a higher risk or burden was for those with higher depressive symptoms.

References:

Rosas-Carrasco, O., Guerra-Silla, M. G., Torres-Arreola, L. P., García-Peña, C., Escamilla-Jiménez C.I, & González-González, C. (2014). Caregiver burden of Mexican dementia patients: The role of dysexecutive syndrome, sleep disorders, schooling and caregiver depression. Geriatrics & Gerontology International, 14(1), 146–152. https://doi.org/10.1111/ggi.12072

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 Sciences9(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 psychiatry26, 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

Prince and colleagues (2012) conducted a population-based survey across rural and urban areas in Latin America, China, and India in order to examine the association between strain and caregiving for people with dementia. The study found that caregiver strain was higher among those caregivers who reduced their working hours to provide care in all sites with the exception of urban India. However, the findings were statistically significant in only six of the total eleven locations (across Latin America, China, and India) that the study was conducted.

References:

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

There is information about the physical and mental health impact that caregivers experience due to caring for people with dementia, but very little about the impact of caring on the caregivers’ other life aspects. Yuniati (2017) finds that caregivers of older people with declining cognitive function had to change and adjust their working hours or work-related travels and to reduce social activities (Hammad et al., 2019).

References:

Hammad, R., Kurniasih, J., Hasan, N. F., Dengen, C. N., & Kusrini, K. (2019). Prototipe Machine Learning Untuk Prognosis Penyakit Demensia (The Prototype of Machine Learning for The Prognosis of Dementia). JURNAL IPTEKKOM : Jurnal Ilmu Pengetahuan & Teknologi Informasi, 21(1), 17. https://doi.org/10.33164/iptekkom.21.1.2019.17-29

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

Most caregivers feel inadequately trained for the skills that they perform because they do not have any formal education in caregiving. Being the primary caregiver, there can be a further delay in educational progress because they do not find time for themselves or social activities outside the family or time to continue with education. They may not look for employment because the needs of the person they support are too demanding to combine work with their care responsibilities. Carers in employment may face the risk of losing their job, limited promotional and training opportunities, and a reduction in retirement savings and Social Security benefits (Collins & Swartz, 2011).

References:

Collins, L. G., & Swartz, K. (2011). Caregiver care. American Family Physician, 83(11), 1309-1317.

 

No information is available.

Employment: carers are often required to give up formal, paid employment in order to care for their family member on a full time basis, with resulting financial strain, stress and family poverty (Kalula & Petros, 2011; Pretorius et al., 2009).

Younger carers are required to give up employment or their educational attainment in order to care for an ailing parent/family member.

Other impacts include relational deprivation, restrictions of social activities, and being prone to social isolation (Gurayah, 2015; Pretorius et al., 2009).

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

Kalula, S. Z., & Petros, G. (2011). Responses to Dementia in Less Developed Countries with a focus on South Africa. Global Aging, 7(1), 31–40.

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

An integrative review about family care in Brazil showed that the carer role resulted in mental, physical, and financial overload, but that this situation was usually seen as both negative (due to the stress of caring for house chores and for the needed person) and positive (given the feelings of love, gratitude, and companionship towards the cared person) by the carers. In the same review, authors found signs of depression and stress among the carers. It is important to point out that this review is about older people’s carers in general, and not specifically about carers of people living with dementia (Oliveira & D’Elboux, 2012). Regarding impacts on employment and education, many of the unpaid carers stopped working or studying after assuming the carer role (Giacomin et al., 2018). No documented impacts on social protection were found.

References:

Giacomin, K. C., Duarte, Y. A. O., Camarano, A. A., Nunes, D. P., & Fernandes, D. (2018). Care and functional disabilities in daily activities – ELSI-Brazil. Rev. Saúde Pública, 52(Suppl 2). https://doi.org/10.11606/S1518-8787.2018052000650

Oliveira, D. C., & D’Elboux, M. J. (2012). Estudos nacionais sobre cuidadores familiares de idosos: Revisão integrativa. Revista Brasileira de Enfermagem, 65(5), 829–838. https://doi.org/10.1590/S0034-71672012000500017

 

This section to be updated soon.

We are unable to find information about impact of social protection on the caregivers that have been caring for people with dementia.

No information is available.

Caregiving for persons living with dementia in South Africa leads to reduced employment and increased financial burden (Gurayah, 2015), increasing family’s reliance on State social protection mechanisms such at the old age pension grant as well as grant-in-aid.

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