“What if I see you, and I don’t know that you’re my daughter, and I don’t know that you love me?”
“Then, I’ll tell you that I do, and you’ll believe me.”
This quote from the 2007 novel by Lisa Genova, titled Still Alice, about a woman who suffers early-onset Alzheimer’s disease speaks to the reality of thousands of South African families whose loved ones go through the debilitating disease.
Dementia, a “very difficult disease” - difficult on the person suffering it and difficult on the people closest to them - affects the person’s ability to communicate, think, reason and remember.
“It is very difficult it turns your life upside down,” Lorraine Schirlinger from the Alzheimer’s South Africa Society said, speaking on the toll it takes on family members who take care of loved ones suffering from it, particularly at its most progressed level.
According to the society, the exact cause of Alzheimer’s disease and most of the other dementias has yet to be established. Many theories have been put forward.
As with most medical disorders, Alzheimer’s is probably caused by a combination of genetic factors and environmental influences.
In South Africa there are several main types of dementia, including Alzheimer’s, Aids-related dementia, alcohol-related, frontotemporal dementia and vascular dementia.
“There are cases of early-onset Alzheimer’s, which affects people from the ages of 30 to 64 where often there is a genetic link involved, such as someone having had it previously in the family line.
“The person then has a 50-50 chance of getting the disease. Then there is Alzheimer’s affecting older people from 64 and older, which affects more women than men, probably because women tended to outlive men,” Schirlinger said.
The number of older people is on the rise globally and this is also the case in South Africa, where projections suggest that by the end of the century those over 60 could make up almost a third of South Africans.
“This statistic is coupled with the fact that life expectancy is rising and so more South Africans than ever before are living well into their 80s and beyond.
“The risk of dementia increases as one ages. By 90, about 40% of this age group will suffer from Alzheimer’s disease, one of the most well-known types of dementia.
“So, as our population ages, the number of sufferers will increase, raising significant concerns for South African society and for families,” said Arthur Case, chief executive of Evergreen Lifestyle, a national retirement lifestyle brand.
“When a retiree continues to live in the family home into their late 70s or 80s, the impact on their children and grandchildren can be negative, especially if dementia sets in. Memory loss, for instance, may result in a stove not being turned off or huge water bills because taps are left running. It’s also near-impossible to leave dementia sufferers on their own,” Case explained.
“This is in itself a burden on the family, and this yoke becomes greater when the aged person needs physical assistance with bathing, dressing and eating. A scenario like this often arises when a family settles the dementia patient in their own home. While family members can keep an eye on the sick person, the responsibility for ongoing daily care can get too much.”
Despite this, according to Schirlinger, home-based care is still preferable as it provides the necessary familiarity the sufferer needs.
“Some families train their domestic workers to scale up their level of care. Other families opt to move their loved ones to retirement villages rather, and a skilled carer is brought in so they are looked after in the home. We must never criticise anyone who opts for this kind of care for their loved one because it is such an extremely difficult situation to be in,” she said.
Case said since no one could be sure whether they would be afflicted in the future, people should take the necessary steps to lessen the impact the disease could have on themselves and their families.
These included: identifying a residential home geared to provide quality of life and dignity at all stages of this period of life; planning for the potential financial impact of the debilitating condition; and planning to curb the overwhelming impact on family members when the condition arose.
Case also referred to the benefits of “ageing in place” - as people were known to be better off if they could remain in the same location, no matter what happened to their health.
“A major relocation, such as from the family home directly into a nursing home or frail-care facility, can be traumatic for both the individual and their families,” he said.
“On the other hand, if they had lived in a retirement facility for a period before having to move to frail care, it is less stressful since the surroundings are familiar and their friends are still nearby.”
Case recommended that people plan well in advance by relocating timeously from their typical large suburban family home into a property or facility that is better equipped to deal with the possible effects of ageing and diminished capacity.
“In the earlier days, the person may be able to live as independently as before and there are many retirement facilities that cater for this.
“At a later stage, if dementia or a physical problem arises, the chosen accommodation should ideally be able to offer the services necessary to cope with the condition. This may involve having ramps rather than stairs, grab rails in bathrooms and bedrooms, or frail care and nursing for someone severely affected by the condition.”