Living with dementia
DEMENTIA is a broad term used to describe a decline in cognitive function that interferes with a person’s ability to perform everyday activities.
It’s not a speciƝc disease, but rather a group of symptoms associated with a decline in memory or other thinking skills severe enough to reduce a person’s ability to perform everyday activities.
Fiji had an estimated 7150 people living with dementia with only 72 admitted to main hospitals between 2002 and 2019, a study on dementia care in Fiji has stated.
The study titled ‘‘Letting it be’: a grounded theory about dementia care in Fiji “was done by Karen Johnston, Edward Strivens and Sarah Larkins from James Cook University, Sefanaia Qaloewai from Fiji National University, Taniela Rasavuka of St Giles Hospital and Robyn Preston of CQUniversity, Townsville, Australia.
Signs of dementia
Having memory loss, getting mixed up with activities of daily living, pacing around the house, being grumpy, change in eating and sleeping habits and going for long walks were changes seen in Fijians who were diagnosed with dementia in Fiji, the study found.
“These changed behaviours shifted over time,” it stated.
“Family caregivers showed high levels of tolerance for these changes with monitoring sometimes occurring over a period of years or not occurring at all until the condition was in more advanced stages or a crisis event occurred.”
Participants described changes in behaviour that were very uncharacteristic for a person, in particular changes in eating, sleeping, and hygiene habits, agitation, an inability to recognise family members, and walking off unexpectedly, as especially concerning.
Of the seven family units that shared their experiences, Ɲve families experienced a crisis event that led to their older family member being diagnosed with dementia. Crisis events that were experienced by family caregivers required immediate intervention from a health service or emergency services.
“A further crisis was reported to sometimes occur because of misinterpretation of changed behaviours associated with dementia which resulted in conƞict and the breakdown of family relationships, exposing an older person to abuse and neglect.”
Letting it be
The study found “letting it be” as the core process in the management of dementia care.
The authors of the study describe “letting it be” as “becoming aware”, “clinging to normal”, and “having heart” towards a family member who had dementia.
“Of crucial importance, the implicit role of families in caring for older people in Fiji facilitates care in place in the community and amongst family,” the study stated.
“While this is driven by cultural and societal norms, other determinants include economic dependence of older adults on others due to limited government social welfare, lack of income security, and reliance on unpaid subsistence activities.
“High expectations of families in terms of care responsibilities for older people can be unattainable for some families, particularly those with smaller, exhausted, or fragile kinship networks or those with low resources, and places older people (particularly those with health needs, such as dementia) at risk of neglect.
“This has implications for stronger income security policy that supports planning for the needs of an older adult, stronger policy around social security to support older adults as well as tangible Ɲnancial support for those providing care for older adults at times of need.”
Dementia signs missed
Signs of cognitive decline and dementia in older age were readily associated with ageing and therefore were commonly missed, the study found.
Families which took part in the study reported a high tolerance for changed behaviours in older age, becoming forgetful, acting immaturely, and being grumpy at times as signs of dementia.
“Strong family care giving values together with high acceptance of memory loss and changed behaviours in older age masks the true impact of dementia on families and communities,” the study stated.
“This contributes to slow evolution of policy and health and social system responses to dementia in Fiji.
“Indeed, the Fiji National Policy on Ageing (2011–2015) includes a statement supporting the need to train providers in care for older people living with dementia.
“However, as with other policies that attempt to address the needs of older adults in Fiji, there is a lack of detailed strategies, monitoring, and resources for implementation.”
Pagla and lialia stigma
People with dementia in Fiji were often called (Fijian Hindi; mad) and (iTaukei; mad), the study found.
“Awareness campaigns need to harness Fijian ways of knowing and include Fijian understandings of dementia with special attention to the cultural and social meanings of dementia, vocabulary, language, and de-stigmatisation,” the study stated.
“Perceptions of dementia overlapped with mental illness and cultural understandings of psychosis in the iTaukei concept “cavuka” which describes a disconnection from reality or a sudden loss of sound mind. Unusual, disruptive, or concerning behaviours observed in older people were also reportedly conceptualised within magico-religious beliefs.
“Similarly, the behaviours of an older person showing signs of dementia could be explained by an ancestral curse or connected with suspicion of performing witchcraft or being related to someone who was suspected of performing witchcraft.
“Family, friends, spiritual healers, and the broader community are the usual sources of support for dementia care therefore education about dementia for the general community is a fundamental strategy to support knowledge sharing throughout Fiji.” Family help needed Families in Fiji who have persons living with dementia should be provided with psychoeducation to help them understand their role in care management, said the study.
“Some service providers were conƝdent that dementia was managed, or could be managed, appropriately within family support networks,” states the study. “Mental health providers actively involved in care for older people living with dementia frequently commented about the importance of providing psychoeducation to families to help them understand their role in care management.
“They promoted ‘tender loving care’ and acceptance as the most important strategies for looking after family members with dementia. Family caregivers shared various strategies they used to manage the care of their older family member who was living with dementia, the study found.
“These included stopping their older family member from doing certain things to keep them safe and let them rest, for example, leaving the house, shopping, and chores, such as cleaning. They also reminded and re-oriented their older family member as needed, reassured them, and assisted them with daily activities.”