Dementia is a brain disease that changes how we think and behave. It mainly affects older people but there are communities, one in Yarumal, a village north of Bogota, Colombia, where more than 5,000 people are suspected to have dementia while they are still in their 40s. There are other such dementia communities throughout the world.
Although there are many types of dementias, the two most common ones are Alzheimer’s disease and vascular dementia. In most cases most dementias are a mixed type, but there is a preference by doctors to diagnose any type of dementia as Alzheimer’s disease.
In reality, most dementias are mixed and express many different types of problems. Alzheimer’s disease was initially identified by its namesake Alois Alzheimer in the 1907. At first, it was to identify a disease that afflicted younger people (younger than 50) and had specific biological changes in the brain. But the definition has changed to include anyone who shows severe memory lapses and problems with performing everyday activities.
We are still not sure what the cause is, and we remain ignorant of the mechanism. There are many people who have the biological disease in their brain and yet they behave normally. There are other cases where people with dementia do not have the biological disease in their brain. It is very confusing. We do not have a cure for Alzheimer’s disease or any other type of dementia. Some medications used for Alzheimer’s disease are the same medications used for most heart problems. Most of these drugs are ineffective, expensive and can cause serious side effects.
In a comprehensive study in May 2012, the US magazine Consumer Report’s Best Buy Drugs concluded that it does not recommend any Alzheimer’s medication as a best buy. Other medications treat some of the symptoms such as restlessness, anxiety, depression, trouble sleeping and aggression. By themselves, some of these medications can be dangerous with little benefit. There is one thing that has not changed in the last century, and that is the care that is needed to look after people with Alzheimer’s disease.
The launch in 2004 of the Malta Dementia Society was established to help some of the 4,500 Maltese with dementia. This number will continue to increase with time, doubling over the next 30 years and exceeding 14,000 by the year 2060. Right now we have more than twice the number of Maltese with dementia than we have hospital beds in Malta. As a result, the responsibility for caring for loved ones with dementia remains with the family.
Caring for a loved one defines the purest expression of love. And there is a lot of love out there. Caregivers tend to be predominantly women, have an average age of 48 and are mainly caring for a relative. Almost all caregivers report negative effects on their emotional health, social activities, leisure time, and more than half reported adverse effects on family relationships.
The responsibility for caring for loved ones with dementia remains with the family
Research has already established that caregivers have higher rates of depression and poorer health. When they are hurt, their wounds heal slower, they respond poorly to influenza and pneumonia vaccines and they suffer more inflammation. When subjects were given intravenous fat injections during times of stress, it took longer for the fats to be filtered from the bloodstream. Residual fat in the blood stream is one of the causes of heart disease.
Caregiving becomes more stressful the longer you continue to do it. In a six-year study of elderly people caring for spouses with Alzheimer's disease, Janice Kiecolt-Glaser, with Ohio State University in the US, found that their health suffered. She found chemicals that responded to stress to be four times higher in this group of caregivers when compared with similar groups who were not providing care. Even younger caregivers had this stress chemical in their bodies.
Such a level of stress has dangerous consequences. Seven out of 10 caregivers died within six years. And for those who survived, even after they stopped providing care – either their loved one passed away or they went to a nursing home – their stress chemicals in the bodies stayed high.
Looking after a loved one with dementia causes your body to become stressed and this stress continues well after you stop looking after that person. To understand why this is, blood samples were taken and the condition of their genes was investigated. There are bits of DNA on the ends of chromosomes that tell us how old our cells are. The shorter these genetic material – called telomeres – the shorter their life. Caregivers showed significantly shorter telomeres. Being aware of all of these negative impacts, caregivers need to reduce as much of the stress as possible. There are ways of doing this.
1. Ask for help. Start off with a sibling, spouse, friend and neighbours and get written commitments from those willing to help.
2. Seek care management advice. There are many opportunities to get help in caring for your loved one. Maybe even with just toileting or laundry. In Malta you might have to pay for some of these services, but if you can afford them, now is the time to start developing a network of support.
3. Make time to rest. Taking a break (respite) from caregiving is important for your health. Make arrangements with family or friends or plan to take your loved one to an adult day care centre for short periods. Join the local dementia association.
Caring for someone you love is, or will be, one of the most stressful events in your life. By recognising this and managing your obligations so that you give yourself respite will go some way to not becoming ill or harming yourself.
Mario Garrett was born in Cospicua and went to St Paula Technical School before moving to England with his family. He obtained a first class Honours at the University of East London and a PhD from the University of Bath, both in psychology. He is currently a professor of gerontology at San Diego State University in California, US. He recently published a critique of research in Alzheimer's disease: The Politics of Anguish: How Alzheimer's disease became the a malady of the 21st century. Garrett maintains a blog on Psychology Today.