Caring for people with dementia: doing it with love or burden?
Dementia is a disease condition common among older adults over age 65. It is caused by a degenerative brain disease with progressive death of neurons in the brain that may result in impairment of intellect, memory & personality, but without impairment of consciousness. Dementia is an umbrella term encompassing a number of diseases (such as Alzheimer’s disease, Lewy Body dementia, or Vascular dementia and Parkinson’s dementia) that have slightly different manifestations and consequences depending on what parts of the brain is affected.
Dementia is a global health concern. The Lanka Alzheimer’s foundation has estimated there may be at least 150 000 people with dementia in Sri Lanka. Life expectancy over 76 years and rise in the ageing population has increased the dementia prevalence in Sri Lanka.
Dementia results in several kinds of changes in one’s life. It causes advance deterioration of cognitive abilities such as thinking, memory and reasoning. People with dementia are usually no longer able to take complete control of their lives, and many of them need major assistance to perform activities associated with daily living (ADL) such as eating, getting dressed, bathing, moving and toileting. Caring for dementia patients poses significant challenges to caregivers. Aim of this article is to discuss the impacts of family caregivers when caring for their loved ones with dementia.
Family members, friends, neighbours or relatives who provide informal care without proper training or payment for a person with dementia are considered as informal caregivers. All over the world most care for people living with dementia is provided by informal caregivers who include spouses, adult children, daughters- and sons-in-law and friends. Women are far more likely to be the caregivers in all countries. Evidence suggests that home based care for older adults with dementia benefits the people with dementia, as there is less reliance on hospital based healthcare, later admission to elderly care homes, better patient quality of life and less early mortality is shown when people with dementia. However, caregiving is a challenging task that may need 24hour supervision, often described as stressful with heavy burden. Such burden is responsible for stress and depression among the caregivers; resulting in poor caregiving outcomes such as negligence, elder abuse and early placement of the older adult within elderly care homes.
The caregiver stressors include physical, emotional and economic pressures. However, diagnosis of a family member with dementia would likely have a significant effect on entire family in various aspects. The responsibility of taking care of the family member with dementia may change the life styles of rest of the family members. Lack of awareness regarding the nature of the condition, lack of caring skills, care givers’ attitudes associated with stigma, blame and lack of psychological support may cause distress for caregivers. Despite the challenges, caregiving also has fulfilling aspects, such as enhanced meaningfulness of relationships, a sense of purpose and pride in the caregiving role. However, most of these factors are culturally influenced. Therefore, understanding and describing the meaning of caregiving, and caregiver engagement, as well as caregiving strategies in different cultures and communities, are important for acknowledging diverse experiences of the family caregivers for people with dementia. It is equally important to give a voice to these family caregivers and explore their views and experiences in order to understand their support needs.
There are number of programmes and services have been developed in high-income countries to assist family caregivers and to reduce caregiver burden. These include provision of information to aid understanding, skills to assist in caring, respite to enable engagement in other activities, and financial support to family caregivers. Generally in many Asian countries elderly people live with their loved ones, and their care is viewed as the family’s responsibility. Therefore in a country like Sri Lanka we need more culturally appropriate services and support for dementia caregivers.
Dementia is also a worldwide research priority. There are 66% of people with dementia live in developing countries, however only 10% of research on this population has been carried out in these countries. To minimise this research gap and to explore the cultural aspects of dementia caregiving, Institute for Research and Development (IRD) has planned to conduct two studies on dementia prevalence and family caregivers. We hope to share the finding with our readers soon.
Reference:
Abeywickrema, S.,Weerasundera, R., Ranasinghe, K. (2015) Assessment of the level of care-burden in informal caregivers of patients with dementia. SL J Psychiatry. 6(1): 4-8
Dilworth-Anderson P. & Gibson, B.E., (2002) The Cultural Influence of Values, Norms, Meanings, and Perceptions in Understanding Dementia in Ethnic Minorities. Alzheimer Disease and Associated Disorders. 16(2): pp S56–S63.
Prince, M.,Ferri, C.P., Acosta, D., Albanese, E., Arizaga, R., et.al.(2007). The protocols for the 10/66 dementia research group population-based research programme. BMC Public Health. 7:165 doi:10.1186/1471-2458-7-165
Wijeratne, C., (2015) Dementia Handbook for Carers and Health Care Professionals in Sri Lanka. IRD
By
Kalpani Abhayasinghe
