If you or someone close to you is diagnosed with Alzheimer’s disease, forget about getting help from medical scheme – in most cases, it is simply unavailable. This is the stark reality in South Africa today that Alzheimer’s South Africa hopes to change with an initiative called Alzheimer’s in Action.
“Alzheimer’s affects thousands of families every year with devastating results. In spite of this, most South African medical scheme do not recognise it as a chronic illness,” says Alzheimer’s SA regional director Jill Robson. Alzheimer’s disease is a progressive and terminal illness with no cure. It generally affects people 65 years of age and older, and sufferers need full-time care when the disease reaches advanced stages. In addition to the emotional trauma that the families of sufferers go through, there is the cost of care and drugs to treat the symptoms.
According to Robson, Alzheimer’s also makes treating other diseases more expensive. “Most people with Alzheimer’s have one or more other serious medical conditions. Dementia complicates management of these conditions. Many Alzheimer’s sufferers do not have an identifiable caregiver, which exposes them to higher risks such as inadequate self-care, malnutrition and untreated medical conditions,” she says.
“New research from the United States also suggests that chronic and often severe stress associated with dementia care giving may exert substantial risk for the development of dementia in spouse caregivers.”
There are currently some 750 000 people in South Africa who have the disease, with many facing financial ruin as a result.
Paying for care is problematic as Alzheimer’s disease is not listed as a chronic disease, which leaves sufferers incapable of accessing the much-needed support of their medical scheme. By definition, a chronic condition is an ailment that has to be treated on an ongoing basis for more than three months. The chronic disease list is a regulated compilation of 25 life-threatening conditions requiring treatment for over 12 months and which may not be excluded by medical schemes. Alzheimer’s is not one of them.
Alzheimer’s in Action hopes to change the situation and has launched a lobbying website – www.alzheimersinaction- as a call to action. The site was launched to try and persuade government to persuade the medical schemes to include Alzheimer’s disease in their future planning. “We would like them to pay for day and respite care and to treat the disease as a chronic condition, paying for the medication on chronic,” says Robson. “We want Alzheimer’s and the other dementias treatment to be included in the list of Prescribed Minimum Benefits. If conditions are included in the list medical schemes have to pay for them.”
Alzheimer’s in Action is encouraging people to go to the website and sign the petition. “We also want people to send us stories of their experiences with the disease – good and bad. This will help us focus the attention of government and medical schemes on this dire need.”
(Press Release, November 2012)