WATCH: Coping with early-onset dementia

WITH the World Health Organisation reporting that there are approximately 50-million people living with dementia worldwide, and nearly 10-million new cases every year, many health authorities believe that dementia cases are on the increase globally.

“With an increasingly large aging population, a group that is statistically much more likely to develop dementia, the global burden of this condition is on the increase, and we have a very similar situation here in South Africa,” says Ivan Oosthuizen, chief executive officer of Livewell Group, an organisation that specialises in dementia care.

Oosthuizen says that in addition to this, the means of diagnosing dementia – a syndrome that is incurable and progressively erodes memory and cognitive function – has markedly improved in recent years.

“This is also no doubt leading to an increase in the number of cases being diagnosed today, as well as to a greater number of younger individuals being identified as suffering from early-onset dementia, which is when it is diagnosed in those under the age of 65. Certainly, the Livewell Group has noted an increased number of enquiries from early-onset patients for assistance in recent years,” he adds.

Early onset dementia

“While the early diagnosis of dementia can be bewildering and exceptionally difficult to come to terms with, some patients are relieved that they are at least able to finally reach an understanding of why they are experiencing cognitive function and memory problems,” Oosthuizen says.

“An early diagnosis of the condition may have certain advantages for patients. We have, for example, had residents who were grateful that they were able to make preparations to take care of their affairs timeously, as well as to comprehensively plan ahead for the care they will require in future.”

Progressive condition

Oosthuizen explains that dementia manifests in numerous different ways and has a range of causes, with some 60 to 70 per cent of cases being related to Alzheimer’s disease. Furthermore, the condition develops at a different pace from one person to another. “Dementia remains, however, an untreatable and unmistakably progressive condition. This means that it becomes increasingly difficult to manage, especially for families within the home environment. Many loved ones find it increasingly challenging and stressful to provide the necessary levels of care required at home that will keep their loved one safe and engaged for as long as possible,” he says.

Planning ahead

According to Oosthuizen, dementia can be very hard on families, and when a loved one is first diagnosed it is not always easy to foresee the cognitive and physical changes that may accompany the condition in later years.

“Most of those who are diagnosed with early-onset dementia therefore find it beneficial to plan in advance with their families in order to minimise the impact that the condition will have on all involved as time goes on.

“In this way, the dementia patient is able to ensure they receive the best possible care when their cognitive function finally deteriorates to the extent that they are often no longer capable of making the most appropriate decisions in terms of their own future health and well-being,” he advises.

“While the diagnosis of dementia can potentially seem as though it will limit the individual’s ability to make their own choices, a proactive and informed stance while they are still able to do so can prove immensely empowering.”

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Oosthuizen notes that early planning enables a person with dementia to firmly express his or her desires for their future care and to make the necessary legal, financial and other decisions well in advance of the progression of the condition.

“Such planning can enable the individual to sort out the intricate financial and legal issues that may be involved, as well as to designate decision-makers on their behalf. In addition, it provides loved ones with a sense of security and can reduce a number of the stresses that the condition often places on families,” he adds.

“It can also enable the person diagnosed with dementia to take maximum advantage of all treatment and support services that are available to them, as well as to develop new coping strategies that will enable them to live a life of maximum independence.”

Oosthuizen recommends that anyone who is diagnosed with dementia pay attention to the following aspects in their forward planning:

• Health and long-term care

• Legal aspects

• Finances and property

Support groups

“Livewell holds free monthly support groups where people can get advice and assistance with their planning from our teams, as well as obtain the support of others who are facing similar challenges,” Oosthuizen points out.

The Livewell Villages in Somerset West and Bryanston offer a comprehensive range of services to support families and provide a safe, comfortable and stimulating environment for people living with dementia. “Dementia is a leading cause of disability and dependency among older people in South Africa and has an important impact, not only on the individual and their families, but also on the broader society and economy,” notes Oosthuizen.

“It is critical that those who are diagnosed are provided with every possible service and support to assist them to achieve maximum independence and remain fully participating members of the family for as long as possible.”

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