DESK REVIEWS | 08.02. Family/unpaid care

DESK REVIEW | 08.02. Family/unpaid care

Family carers of people living with dementia have access to free support services, such as carer psychosocial support meetings and training about dementia through all the four Alzheimer’s Associations affiliated to the Brazilian Federation of Alzheimer’s Associations (FEBRAZ). Such meetings also provide information and advice on legal rights. However, services tend to be provided mostly in urbanized and high-income areas (located mostly in the Southern and South-Eastern regions), meaning that people from poorer and rural areas often have limited access to support. All associations affiliated to FEBRAZ have some partnerships established with a number of other institutions, such as private hospitals (e.g., Hospital Nove de Julho in Sao Paulo), Secretariats of Health, Lions Clubs, Military Police, among others, that might provide support for carers. There is no availability of respite services or financial benefits/social (security) protection for carers in Brazil. In some cases, people living with dementia may receive disability allowance through court orders.

Family caregivers in Kenya experience financial instability due to costs of treatment and daily living expenses. In addition, they struggle due to limited access to information and evidence-based care. Carers have been found to experience burn out and stigma linked to misconceptions about the illness (Johnston, 2017). Unfortunately, they do not receive any monetary compensation from the government or other forms of formal support from health or social services (Chepngeno-Langat, 2014). ADOK, however, offers training and monthly support group meetings for caregivers of persons with dementia. There they can share their experiences around the provision of care while giving each other support.

References:

Chepngeno-Langat, G. (2014). Entry and re-entry into informal care-giving over a 3-year prospective study among older people in Nairobi slums, Kenya. Health & Social Care in the Community, 22(5), 533–544. https://doi.org/10.1111/hsc.12114

Johnston, H. (2017). Caring for caregivers: challenges facing informal palliative caregivers in Western Kenya. Independent Study Project (ISP) Collection, 2684https://digitalcollections.sit.edu/cgi/viewcontent.cgi?article=3707&context=isp_collection

No support (monetary, in-kind, services, etc.) is available for family/unpaid carers.

Progres LU provides family members who care for older people with non-cash assistance worth Rp. 3,000,000 per person per year (Lukihardianti & Amanda, 2019). We could not find a clear breakdown on what non-cash assistance entails. Since 2018, low-income families that are enrolled in Program Keluarga Harapan (Family Hope Program) receive additional assistance if they take care of older family members in their homes (TNP2K, 2018b).

References:

Lukihardianti, A., & Amanda, G. (2019). Kemensos akan Beri Tambahan Dana untuk PKH yang Punya Lansia.

TNP2K. (2018b). The future of the social protection system in indonesia: social protection for all (pp. 1–15). http://tnp2k.go.id/download/24864181129 SP Exe Summary ENG-web.pdf

None is available for family/unpaid carers.

The Keluarga Harapan Program (PKH) is a conditional cash transfer programme which is put in place for the very poor families. The programme was not specifically for unpaid caregivers of people with dementia as it focuses on reducing inter-generational poverty in the long-term by investing in children’s health and education, with a “top-up” feature if the family has an older member living with them. The program was also designed to absorb the scheme for older people (Asistensi Sosial Lanjut Usia/ASLUT) in 2017 (Kartika et al., 2019).

References:

Kartika, A. W., Choiriyah, M., Kristianingrum, N. D., Noviyanti, L. W., & Fatma, E. P. L. (2019). Pelatihan Tugas Perawatan Kesehatan Keluarga Caregiver Lansia dalam Pogram RURAL (Rumah Ramah Lansia). Jurnal Pengabdian Kepada Masyarakat (Indonesian Journal of Community Engagement), 5(3), 448. https://doi.org/10.22146/jpkm.45139

None is available for family/unpaid carers.

Although not directed specifically towards unpaid carers, there are several training and education programmes conducted by the ARDSI focused on old age/geriatric care (Alzheimer’s and Related Disorders Society of India (ARDSI), 2010). These are described in Table 1.

Table 1 provides an overview of ARDSI Training and Education Programmes.

ARDSI Training and Education Programmes
 Programmes Duration Description
ARDSI School of Geriatric Care  – Established in 1993 in Kerala, this school provides several training and education programmes with specific focus on dementia care.
Postgraduate Diploma in Integrated Geriatric Care 1 year Focuses on managerial/supervisory services to provide institutions with inputs on various areas within the field of geriatrics such as counselling, research, management, policy and planning.
Training NGO Functionaries:

 

1) Certificate Course

 

2)Geriatric Counselling Training

1 month

 

5 days

This training is relevant for institutions like day care centres, residential facilities, or other dementia specific care centres.

Source: (ARDSI, 2010)

References:

Alzheimer’s and Related Disorders Society of India. (2010). THE DEMENTIA INDIA REPORT 2010: Prevalence, impact, cost and services for dementia. New Dehli. Retrieved from https://ardsi.org/pdf/annual%20report.pdf

In 2019, the Ministry of Health released a practical guideline for caregivers in taking care of the elderly, consisting of information on long-term care for the elderly, categorisation of elderly based on their level of dependence, general caring tips such as skincare, bathing, communication, praying, and recreation for the elderly in care (Kementerian Kesehatan RI Direktorat Jenderal Kesehatan Masyarakat, 2018). Also in 2019, a study in Malang, East Java, provided training for family caregivers to ensure that home environment is optimal for the elderly’s well-being. The study finds that providing training for carers of home-bound elderly with chronic pain is effective to enhance the ability of caregivers in improving the health status of the elderly (Ministry of Health Regulation No. 79/2014 on Geriatric Services in Hospitals (Permenkes No. 79/2014 Tentang Pelayanan Geriatri Di RS), 2014).

References:

Kementerian Kesehatan RI Direktorat Jenderal Kesehatan Masyarakat. (2018). Pedoman untuk Puskesmas dalam Perawatan Jangka Panjang bagi Lanjut Usia. Kementerian Kesehatan RI.

Ministry of Health Regulation No. 79/2014 on Geriatric Services in Hospitals (Permenkes No. 79/2014 tentang Pelayanan Geriatri di RS). (2014). (Testimony of Ministry of Health Republic of Indonesia).

Very few basic programs for family/unpaid carers are available. Most recent data (2017) showed there are only two training programmes at national level for carers of people with chronic diseases or disabilities (López-Ortega & Aranco, 2019), and one for carers of people with dementia provided by the National Institute of Geriatrics. The course “Person-centred care for people with dementia” is an online course for general public, in this way people can know and establish different care practices for people with dementia, using a person-centred approach.

References:

López-Ortega, M., & Aranco N. (2019). Envejecimiento y atención a la dependencia en México. Nota técnica del BID. https://publications.iadb.org/publications/spanish/document/Envejecimiento_y_atención_a_la_dependencia_en_México_es.pdf

The number of psychosocial support services available for carers in India is limited. In 2010, there were approximately 100 memory clinics in the country that were reported to offer assessment information and advice (ARDSI, 2010). Six domiciliary care services and 10 dementia helplines exclusive to persons with dementia were also reported in 2010 (ARDSI, 2010). These numbers are gradually increasing due to an increase in awareness and greater need for dementia services. Organisations like ARDSI, Nightingales Medical Trust and Caregiver SAATHI also provide psychosocial support through frequent caregiver support meetings and telephone support with counsellors and dementia experts.

References:

Alzheimer’s and Related Disorders Society of India. (2010). THE DEMENTIA INDIA REPORT 2010: Prevalence, impact, cost and services for dementia. New Dehli. Retrieved from https://ardsi.org/pdf/annual%20report.pdf

There is no systematic psychosocial support from the government for unpaid or family caregivers in Indonesia. However, it is worth noting that there is a non-governmental organisation working to support dementia caregivers in Indonesia such as Alzheimer Indonesia and Perkumpulan Asuhan Demensia Indonesia (PADI), which conducts events such as talks and seminars focusing on educating and improving capabilities of caregivers of people with dementia (Alzheimer’s Indonesia, 2019b; Perkumpulan Asuhan Demensia Indonesia, n.d.).

References:

Alzheimer’s Indonesia. (2019b). Tentang Alzheimer Indonesia.

Perkumpulan Asuhan Demensia Indonesia. (n.d.). Facebook Page: Perkumpulan Asuhan Demensia Indonesia. Retrieved December 6, 2020, from https://www.facebook.com/916681961846086/posts/perkumpulan-asuhan-demensia-indonesia-padi-or-indonesian-society-of-dementia-car/1054667844714163/

 

There are a few respite care facilities that exist in the form of day care centres and residential facilities. There were 6 residential facilities, 4 in Kerala, 1 in Karnataka and 1 in Maharashtra (ARDSI, 2010) as of 2010. There were also 10 day-care centres at which trained professionals provide care to people with dementia during the day (ARDSI, 2010). The number of these services have increased marginally over the years (Refer to Table 7.4 and Table 7.5 in Part 7).

References:

Alzheimer’s and Related Disorders Society of India. (2010). THE DEMENTIA INDIA REPORT 2010: Prevalence, impact, cost and services for dementia. New Dehli. Retrieved from https://ardsi.org/pdf/annual%20report.pdf

Respite care is defined in the Regulation of Ministry of Health of the Republic of Indonesia No. 79/2014 (Ministry of Health Republic of Indonesia, n.d.). It is described to be within hospital or health facility settings, containing rooms dedicated for individual geriatric patients to stay, with communal areas like libraries, socialising areas, gardens, and reception rooms for families. In practice, there are various publicly and privately-owned day-care centres for older people (not specific to those with dementia). Rehabilitasi Sosial Lanjut Usia (RSLU) are government-owned social rehabilitation centres for older people. One of the services offered is day care. There are pre-set eligibility criteria for the day-care assistance recipients, regulations for day care workers, and indicators to measure the success of day-care centres (Kristanti et al., 2018a).

References:

Kristanti, M. S., Engels, Y., Effendy, C., Astuti, Utarini, A., & Vernooij-Dassen, M. (2018a). Comparison of the lived experiences of family caregivers of patients with dementia and of patients with cancer in Indonesia. International Psychogeriatrics, 30(6), 903–914. https://doi.org/10.1017/S1041610217001508

Ministry of Health Republic of Indonesia. (n.d.). Day Care (Pelayanan Harian Lanjut Usia).

The Maintenance and Welfare of Parents and Senior Citizens Act (2007) places the responsibility on children or relatives to take care of the elderly and highlights that neglect or abandonment of elderly people is a punishable offence by law (Ministry of Law and Justice, 2007).

References:

Ministry of Law and Justice. (2007). Maintenance and welfare of parents and senior citizens Act. Government of India. Available from: https://www.indiacode.nic.in/bitstream/123456789/6831/1/maintenance_and_welfare_of_parents_and_senior_citizens_act.pdf

No information on legal rights of family providing unpaid care for older persons was found.

We have information on informal care used by the general population, not specifically for people living with dementia. According to the first nationally representative study of older people published in 2018 (ELSI-Brazil), 94.1% of the care is provided by family members at home, of which 72.1% are provided by women (Giacomin et al., 2018). An integrative review conducted among Brazilian studies between 2011 and 2016 also revealed that the majority of informal carers of older people (not specifically carers of people living with dementia) are women (usually daughters), aged 56.3 years (on average), married, and who dedicated themselves exclusively to caring (Santos et al., 2017).

In Brazil, there is a social expectation that women (the first choice would be the spouse; and the second, a daughter or daughter-in-law) would be the primary caregiver. Care homes are not accepted by the general population due to stigma and poor regulatory systems of the quality of such care services (Camarano & Barbosa, n.d.). In addition, there is a very limited number of care homes which are public; the majority of them are private services which need to be paid for by the families. This contributes to the maintenance of unpaid care as the main source of care for older people nationally.

References:

Camarano, A. A. & Barbosa, P. (n.d.). Instituições de Longa Permanência para Idosos no Brasil: Do que se está falando? (pp. 479–514). Retrieved July 17, 2019, from http://repositorio.ipea.gov.br/bitstream/11058/9146/1/Institui%C3%A7%C3%B5es%20de%20longa%20perman%C3%AAncia.pdf

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

Santos, D. F. B. dos, Carvalho, E. B. de, Nascimento, M. do P. S. S. do, Sousa, D. M. de, & Carvalho, H. E. F. de. (2017). ATENÇÃO À SAÚDE DO IDOSO POR CUIDADORES INFORMAIS NO CONTEXTO DOMICILIAR: REVISÃO INTEGRATIVA. SANARE – Revista de Políticas Públicas, 16(2). https://doi.org/10.36925/sanare.v16i2.1181

Unpaid carers are those who provide care on a regular basis (i.e., family members) and are often closely related to the person with dementia. Spouses, sons, daughters, daughters-in-law and parents are the usual caregivers (informal caregivers) (Brodaty and Donkin, 2009). In traditional Indian culture, young adults of child-bearing age, earn and save for their children’s future. The assets gained are utilised for their children’s education, marriage expenses and subsequent costs associated. In this process they often fail to save for their old age. However, it is understood that their children will take care of them as they age. According to Gupta (2009), this understanding arises from the cultural concept of “dharma” (duty) (pp.1042), which emphasises upon this “moral duty” (pp.1042) of adult children to provide care and support for their elderly parents and in-laws. Traditionally, the son of the house marries and brings in a daughter-in-law, who will take care of the aging parents. In the event of frailty and ill health associated with old age, it is this social system that provides a background for age related decline and appropriate care arrangements. In this, she will be assisted by the extended family who will take turns to provide instrumental support, often in the form of assistance for hospital visits, respite for the primary caregiver and so on. This system has been the foundation of dementia care in India for many decades. However, demographic and economic changes are reshaping this familial system of care. In the absence of institutional support for the elderly, many families are struggling to maintain traditional caregiving roles (Srivastava et al., 2016).

References:

Brodaty, H., & Donkin, M. (2009). Family caregivers of people with dementia. Dialogues inClinical Neuroscience, 11(2), 217–228. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/19585957

Gupta, R. (2009). Systems Perspective: Understanding Care Giving of the Elderly in India. Health Care for Women International, 30(12), 1040–1054. https://doi.org/10.1080/07399330903199334

Srivastava, G., Tripathi, R. K., Tiwari, S. C., Singh, B., & Tripathi, S. M. (2016). Caregiver Burden and Quality of Life of Key Caregivers of Patients with Dementia. Indian Journal of Psychological Medicine, 38(2), 133–136. https://doi.org/10.4103/0253-7176.178779

Indonesia’s culture is characterized by strong family bonds and familial piety and, thus, caregiving for people with dementia is perceived as obligatory for family members (Hunger et al., 2019). In addition, the lack of available long-term care services leaves some families no other option but to take up the caregiving responsibilities. Kristanti and colleagues (2019) qualitatively compared the experience of family members caring for relatives with dementia and cancer in Yogyakarta. The main differences identified was that carers of people with dementia missed the loss of their previous relationship with the person they cared for and experienced difficulties in communicating with their relatives. In addition, carers of people with dementia blamed themselves as they believed they contributed to their relatives’ illness. They also found that in Indonesia, family carers invoke words such as “obligation” and “calling” to express reasons to be a caregiver for people with dementia (Kristanti et al., 2019).

Religion also plays a role in shaping the notion of obligation to give care, as some carers believe that good deeds on earth will be rewarded in the afterlife. For adult children, caring for their ailing parents is also a form of showing gratitude or reciprocity (Tatisina & Sari, 2017). Gender plays a significant role in caring for older people and people with dementia, with more women than men taking the role of carers (Tatisina & Sari, 2017).

References:

Hunger, C., Kuru, S. S., & Kristanti, S. (2019). Psychosocial burden, approach versus avoidance coping, social support and quality of life (QOL) in caregivers of persons with dementia in Java, Indonesia: A cross-sectional study. https://doi.org/10.21203/rs.2.16801/v1

Kristanti, M. S., Effendy, C., Utarini, A., Vernooij-Dassen, M., & Engels, Y. (2019). The experience of family caregivers of patients with cancer in an Asian country: A grounded theory approach. Palliative Medicine, 33(6), 676–684. https://doi.org/10.1177/0269216319833260

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.

Family members who provide care in Kenya continue to keep this role because of the fulfillment they get from giving care to their family member. They may also perceive providing care as a biblical mandate or maintain their role to avoid shame (Cappiccie et al., 2017). Additionally, unpaid care work is seen as a women’s domain while working for pay is considered a masculine task hence the high percentage of women assuming caregiving roles (Ferrant et al., 2014).

References:

Cappiccie, A., Wanjiku, M., & Mengo, C. (2017). Kenya’s Life Lessons through the Lived Experience of Rural Caregivers. Social Sciences, 6(4), 145. https://doi.org/10.3390/socsci6040145

Ferrant, G., Pesando, L. M., & Nowacka, K. (2014). Unpaid Care Work: The missing link in the analysis of gender gaps in labour outcomes. OECD Development Centre: Issues Paperhttps://www.oecd.org/dev/development-gender/Unpaid_care_work.pdf

 

Cultural norms towards care for older adults, children, and people with disabilities are still strong, with a large proportion of individuals stating that the family should have the main responsibility for caring. However, economic and social changes in the last years make these expectations increasingly difficult to meet (López-Ortega & Gutiérrez-Robledo, 2015). In a context with practically no publicly funded support for carers available nationally, especially for those caring for older adults and people with disabilities, families/unpaid carers provide the largest proportion of care in the country. Strong gender roles imply that within families, most care is taken up by women. In addition, women frequently take up most of other domestic activities (cleaning, washing, etc.) and increasingly, try to obtain some reconciliation between all these household responsibilities and their own individual development through education and work outside the household (Barrios Márquez AY & Barrios Márquez, 2016; Pedrero Nieto, 2004). As a result of the demographic transition and often perceived as a last-resource option, an increasing number of men have been observed to provide care for their spouses (Giraldo-Rodríguez et al., 2019; Nance et al., 2018).

References:

Barrios Márquez AY, & Barrios Márquez, O. (2016). Participación femenina en el mercado laboral de México al primer trimestre de 2016. Economía Actual, 9(3), 41–45.

Giraldo-Rodríguez, L., Guevara-Jaramillo, N., Agudelo-Botero, M., Mino-León, D., & López-Ortega, M. (2019). Qualitative exploration of the experiences of informal care-givers for dependent older adults in Mexico City. Ageing and Society, 39(11), 2377–2396. https://doi.org/10.1017/S0144686X18000478

López-Ortega, M., & Gutiérrez-Robledo, L. M. (2015). Percepciones y valores en torno a los cuidados de las personas adultas mayores. In L. Gutiérrez Robledo & L. Giraldo (Eds.), Realidades y expectativas frente a la nueva vejez. Encuesta Nacional de Envejecimiento. (pp. 113–133). Instituto de Investigaciones Jurídicas, Universidad Nacional Autónoma de México.

Nance, D. C., Rivero May, M. I., Flores Padilla, L., Moreno Nava, M., & Deyta Pantoja, A. L. (2018). Faith, Work, and Reciprocity: Listening to Mexican Men Caregivers of Elderly Family Members. American Journal of Men’s Health, 12(6), 1985–1993. https://doi.org/10.1177/1557988316657049

Pedrero Nieto, M. (2004). Género, trabajo doméstico y extradoméstico en México. Una estimación del valor económico del trabajo doméstico. In Estudios Demográficos y Urbanos (Vol. 19, pp. 413–446). https://www.redalyc.org/pdf/312/31205605.pdf

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.

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.

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.

No. No such policies were found on this regard.

There are currently no employment policies in place to accommodate carer needs. Caregivers often have to cut back on paid work in order to meet care demands (Prince & 10/66 Dementia Research Group, 2004) and are usually not compensated for this.

References:

Prince, M., & 10/66 Dementia Research Group. (2004). Care arrangements for people with dementia in developing countries. International Journal of Geriatric Psychiatry, 19(2), 170–177. https://doi.org/10.1002/gps.1046

We are unable to find information for employment policies for unpaid/family carers from sources.

No there are no employment policies in place for them.

Yes. There is evidence that family carers of older people present signs of depression and stress (Oliveira & D’Elboux, 2012).

References:

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

 

There is limited evidence examining the impact unpaid care has on both the physical and mental health of caregivers. Srivastava and colleagues (2016) examined the quality of life (QOL) and burden experienced by primary caregivers of people with dementia in Lucknow, Uttar Pradesh. The authors report that caregiver burden ranges from mild to moderate, but this burden affects the psychological, physical, social, and environmental QOL of caregivers. Similarly, Jathana and colleagues (2011) found caregiving to be associated with poor physical and mental QOL in a study conducted in India.

References:

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).

Srivastava, G., Tripathi, R. K., Tiwari, S. C., Singh, B., & Tripathi, S. M. (2016). Caregiver Burden and Quality of Life of Key Caregivers of Patients with Dementia. Indian Journal of Psychological Medicine, 38(2), 133–136. https://doi.org/10.4103/0253-7176.178779

No specific data was presented, as it is not available.

The key providers of free information and support are the Alzheimer’s Associations. Some secondary level health services provide carer support through outpatient clinics across the country. There are also several services for which people can pay for support privately.

Families can predominantly access psychosocial support from non-governmental organizations (e.g., ARDSI, NMT, Caregiver SAATHI etc).

Currently, the government’s support through social assistance programmes is the most common type of services available for family/unpaid carers. However, NGOs also play a role in providing support for family/unpaid carers, for instance, Alzheimer’s Indonesia and PADI (Alzheimer’s Indonesia, 2019b; Perkumpulan Asuhan Demensia Indonesia, n.d.).

References:

Alzheimer’s Indonesia. (2019b). Tentang Alzheimer Indonesia.

Perkumpulan Asuhan Demensia Indonesia. (n.d.). Facebook Page: Perkumpulan Asuhan Demensia Indonesia. Retrieved December 6, 2020, from https://www.facebook.com/916681961846086/posts/perkumpulan-asuhan-demensia-indonesia-padi-or-indonesian-society-of-dementia-car/1054667844714163/

Training is the only support available at the moment. The main providers are two social security institutions (ISSSTE and IMSS) and the National Institute of Geriatrics (INGER).

No. Such technologies are starting to be explored for use in Brazil by the industries and universities; however, they are still incipient and are purchased mainly by wealthy people. There is also an important barrier for approval of commercialization of such devices by the government due to unknown reasons, but we speculate this might be due to e.g., bureaucracy, concerns about safety, and political interests. There is no official information about this for consultation.

Yes, please refer to part 7.

Technologies, such as the mobile application Qlue in Jakarta may play a role in supporting people with dementia and their carers, but there is no evidence regarding its success so far. A 2019 study authored by Yogyakarta students and published by the Ministry of Communication and Information focused on prototype machine learning with forward-chaining method to support the diagnosis of dementia (Badan Litbangkes Kementerian Kesehatan Republik Indonesia, n.d.; Kementerian Riset dan Teknologi/Badan Riset dan Inovasi Nasional, n.d.; Lembaga Ilmu Pengetahuan Indonesia, n.d.).

References:

Badan Litbangkes Kementerian Kesehatan Republik Indonesia. (n.d.). Badan Litbangkes Kementerian Kesehatan Republik Indonesia.

Kementerian Riset dan Teknologi/Badan Riset dan Inovasi Nasional. (n.d.). Kementerian Riset dan Teknologi / Badan Riset dan Inovasi Nasional. https://www.ristekbrin.go.id/

Lembaga Ilmu Pengetahuan Indonesia. (n.d.). Lembaga Ilmu Pengetahuan Indonesia.