Anne: There's no point in going on living. That's how it is. I know it can only get worse. Why should I inflict this on us, on you and me?
Georges: You're not inflicting anything on me.
Anne: You don't have to lie, Georges.
Georges: Put yourself in my place. Didn't you ever think that it could happen to me, too?
Anne: Of course I did. But imagination and reality have little in common.
Georges: But things are getting better every day.
Anne: I don't want to carry on. You're making such sweet efforts to make everything easier for me. But I don't want to go on. For my own sake, not yours.Georges: I don't believe you. I know you. You think you are a burden to me. But what would you do in my place?
In 2006 the Central Statistics Office estimated that nearly 5% of the Irish population is engaged in providing hands-on care for a relative. While this can be very rewarding for many people, it presents many challenges that can be highly stressful, particularly for those caring for a relative with dementia. In addition to seeing the loss of independence in a loved one, dementia can be associated with challenging behaviours such as night-time wandering, irritability and aggression.
A recent study has indicated that people providing care to family members with Alzheimer's disease have higher levels of depression as well as stress and anxiety compared to non-caregivers. This may be sadly predictable, but the results also indicated that caregivers performed more poorly on a number of tests of cognitive function. Furthermore, caregivers had disrupted output of cortisol-a hormone which is activated by acute psychosocial stress (and associated with fight-or-flight mechanisms such as increased heart rate) but whose function can be damaged by long-term stress.
Many caregivers for people with dementia are their spouses, who are elderly themselves. As the ageing process can have effects on the brain which are similar to those of chronic stress, there may be a compounding effect of these two factors. At the same time, where children are providing care for elderly parents they may have to balance responsibility for their parent with work and/or children of their own. This may partly explain why spouses are sometimes more willing to take part in research in this area than sons/daughters.
I wonder how often is the question is also asked how stressful is it to receive caregiving? Again, this can be difficult to disentangle from other stresses, such as those of deteriorating health and losing one's independence, but (for example) trying to minimise the extent of one's dementia to one's family caregiver must no doubt act as an additional source of stress for some people in the early stages of dementia.
There are psychological interventions such as cognitive-behavioural group therapy which have been shown to help caregivers to better cope with the challenges they face. At a broader level, perhaps one of the most important contributors to the level of caregiving burden is not just the presence of problems but the lack of an extra pair of hands. Indeed, there is evidence that cortisol output is more normalised on days when caregivers avail of adult day services compared to days when they do not. Sadly, too often there aren't enough people other than the primary caregivers pitching in a few hours a week to give the main caregiver a break. At present I would include myself in that criticism. At a societal level, I can't help but imagine that this concentration of the burden of care in the hands of fewer people also leaves older people more vulnerable to elder abuse. While "isolated individuals" may carry out such acts, they can only do so because so many of us do not watch out for each other.