Emotional burden of caring for the elderly with dementia

Alhaja Fati is a 72-year-old retired accountant who has been progressively exhibiting difficult behaviours. She has recently started accusing her husband (of 45 years standing) of trying to kill her, so he can marry another wife. 

Sometimes she does not recognise him and wakes up at night screaming that there is a stranger in her bed who wants to harm her. On one occasion, she grabbed the bedside lamp holder and struck him on the head with it. Thus, they currently sleep in different rooms.

Sometimes she wants to go for a stroll in the middle of the night and will become irritable and agitated if she is not allowed to do so. She would sometimes go out of the house and subsequently not remember her way back home. 

She also became so forgetful such that sometimes has difficulty recognising her own children or remembering their names. The children currently live in faraway Kano, and other cities in Europe and America, while she lives in Lagos. While the memory problems have been relatively easier to bear, the behavioural problems have completely exhausted her husband, who is himself frail and hypertensive. 

She sometimes refuses to eat food. The longstanding housekeeper that they have had for nearly two decades was sent packing when her husband caught her slapping Alhaja, and threatening to beat her if she did not finish eating her food. The subsequent house-helps have not lasted beyond three months before they became fed up of the constant harassments and accusations. 

The children have contemplated taking mama to live with them for some time, so that daddy can get some respite. But they will have to go to work, and mama may walk away and get lost in their absence.

 Long stay homes for the elderly are very few and the standard of care provided is a source of concern. They had tried asking relatives from the village to come and help, such that they will put the person on a salary but they have not secured someone reliable. 

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In the past few weeks, she started defecating while fully clothed, and would not say anything until they start perceiving the foul odour. Thus, Alhaja was taken to a hospital where she was referred to a psychiatrist. They were informed that she had dementia and placed on some medications, but she has refused to use the drugs, so they are back to square one. These problems have been ongoing for about three years now and the entire family members are all at their wits end at this point. 

About dementia

Dementia occurs when there is a marked and very severe deterioration in brain functions among the elderly. The symptoms are not always exactly the same in different individuals but the most consistent complain is a gradual but progressive worsening of the ability to remember things. 

The categories of problems usually experienced may therefore be classified into three groups: memory problems or excessive forgetfulness; behavioural problems such as refusing to eat, defecating inappropriately, or becoming aggressive; and problems with day to day functioning such as dressing and grooming.

The emotional burden 

The responsibility of caring for senior citizens with dementia is a demanding responsibility that often requires round the clock surveillance. It gradually wears down the patience and goodwill of relatives and caregivers who may then become resentful, irritable and may eventually tip over into elder abuse. 

It takes an emotional toll on the caregivers, as they may have to make sacrifices in other aspects of their life – such as work, family and social interactions. There is also the financial responsibility involved to perform tests, take to hospital, employ a housekeeper or nurse, or pay to keep in a nursing home, and so on. 

Those directly responsible for caregiving, need to plan it in such a way that no single person is overwhelmed. Often times when these problems begin to occur, the children are already grown and scattered across different cities or may even be outside the country. And with the breakdown of the extended family system network and increased urbanisation, it becomes a very difficult problem to resolve. 

While nursing homes for the elderly are springing up all over the place, they require strict supervision and monitoring to prevent elder abuse in these homes. Indeed, elder abuse can also occur within their homes.

Behavioural problems may be controlled with medications; but even more importantly, it is crucial that they benefit from a comprehensive medical review to check for other health issues which may also be contributing to their poor performance, such as hypertension – causing strokes, or diabetes – causing confusion. 

Conclusion

The burden of caring for the elderly in the context of dementia is by no means easy; it requires everyone to contribute and share the responsibility. This is in commemoration of the Dementia Action Week (May 16 to May 22) to promote awareness and support for affected persons and their families.