Inclusive, Enabling Communities

Inclusive, Enabling Communities
Learning Brief


Dementia SA

Raising awareness about dementia in South Africa

Category: Inclusive, Enabling Communities | Older persons | 12 October, 2014 - 13:12

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Introduction

Dementia is a global problem. The world’s population is aging, resulting in an increase in the number of people with non-communicable diseases such dementia. In 2010, the total number of people with dementia worldwide was estimated at 35.6 million, and this figure is expected to double every 20 years. Every year, the number of new cases of dementia grows by 7.7 million (Dementia a public health priority, 2012).

This learning brief answers the questions of what dementia is, how it affects South Africans, how it can be managed, what is being done about it in the country, and the challenges facing these efforts.

What is dementia?

Dementia is the term used to describe the symptoms that occur when a brain is affected by certain diseases or conditions. There are several causes of dementia. The most common include Alzheimer’s disease, vascular dementia, dementia with Lewy bodies, Korsakoff’s (Alcohol related dementia), and Aids-related dementia.

Dementia is a degenerative condition with no known cure. Symptoms include memory loss, cognitive impairment, difficulty communicating, and changes in mood, and they tend to get worse over time. These experiences are distressing for the individual and upsetting for their loved ones. Nevertheless, people living with dementia can still have a good quality of life, provided the right long-term care plan is in place and being delivered (World Alzheimer’s Report 2013).

Does dementia affect South Africans?

Yes, it is estimated that some form of dementia affects approximately 730,000 people in South Africa (roughly 2% of the population). However, a recent Free State University study found that this figure might be too low because the prevalence of dementia amongst urban black communities alone was far higher than initially estimated. The study found that the prevalence was approximately 6% for adults aged 65 years and older indicating that Dementia may be underreported.

Who does dementia impact?

Dementia has a direct impact on people over the age of 65 years. However younger people can also develop dementia, especially in the case of AIDs related dementia.

Dementia also has a secondary impact on the families and communities of the patient. Dementia patients can be difficult to care for and in many South African households, care responsibilities fall on the elderly. For example, elderly people who look after grand children may be burdened with additional care responsibilities when they are tasked with caring for a relative with Aids related dementia. At the same time, the elderly person may be suffering from Alzheimer’s disease, or another form of dementia. These people can easily become confused, disorientated and are not equipped to be caregivers themselves. Such situation can lead to misunderstanding and conflict within the family that negatively impacts on children and other relatives.

Dementia is overwhelming, not only for the people who have it, but also for their caregivers and families. There is a lack of awareness and understanding of dementia that results in stigmatization, and barriers to diagnosis and care. It has broad reaching physical, psychological and economic impacts on caregivers, families, and communities. 

How can dementia be managed?

Dementia can be managed. Whether at the individual, care-home, or national level there are three requirements needed to successfully implement long-term planning for dementia patients:

  1. Awareness of the disease
  2. Early diagnoses
  3. Sufficient support  

At the individual level, it is ideal for any person affected by dementia to be cared for in their homes for as long as possible.  In most cases spouses or family members are responsible for the care of their loved one. Under such circumstances, it is easier to plan for long term care if the spouses or family members are able to access knowledge of the disease, medication, and support as needed. Some families have the financial resources to hire a private caregiver to assist with such care. As the patient’s condition deteriorates, the emotional and physical strain on the caregiver intensifies, which may lead to depression and isolation that can prompt abuse. 

At the care-home level, it is ideal for people with dementia to have a clean, safe, caring environment where there is a routine they can easily follow. Some families are relieved to find placement in private retirement homes for their loved one, and they are relieved of the care burden. Dealing with the disruptive behaviour of an elderly suffering from dementia can become overwhelming and a private or state care-home may be the best solution for all involved. Some may struggle with feelings of guilt about leaving their relative in the care of an institution.

At the national level there are very few subsidized care homes for dementia sufferers and dementia is not recognised as a health priority. Consequently, this means that most caregivers and families are left with the little choice but to take on the responsibility of caring for the patient – often without the necessary support and understanding.   

What are the challenges facing care for people with dementia in South Africa?

In South Africa there are numerous challenges that hinder better access to care for people with dementia. These challenges can be cultural or structural, both of which can be overcome with increased awareness and effective lobbying of government.

First, low levels of awareness about dementia lead to the stigmatization, abuse, isolation and neglect of elderly people displaying symptoms of dementia. People suffering from dementia become vulnerable and this opens them up to exploitation and abuse. In some instances, elderly people displaying strange behaviour associated with dementia are accused of witchcraft – leading to abuse and even death.

Second, many countries around the world like Australia, Canada, Denmark, and France have developed dementia policies, plans and strategies but South Africa has not. In South Africa the Department of Health has not even acknowledged that dementia as a health problem. It is thus essential that the Department of Health and Department of Social Development work together to acknowledge the illness, define diagnosis criteria, and co-ordinate care and services for people with dementia and their carers. The Department of Social Development has made some progress in this field by supplying funding for social work services in KwaZulu-Natal that are dedicated to dementia patients, and by funding training programs in the Free State. We believe it is vital for government to declare dementia a health priority, to develop a plan of action to manage it, and to make funds available to address the problem.

What is presently being done to address the problem of dementia in South Africa?

At the 2013 African conference of the Alzheimer’s Disease International a committee was established to develop a manifesto on dementia for South Africa. The primary objective of the manifesto is to “Create an innovative, effective, understandable South African document that has the power of persuasion and need for action”. The completed manifesto provides guidance on the way forward to begin developing a National Dementia Plan but government partners are slow to participate in partnering for solutions.   

In the meantime, Dementia South Africa and some smaller NPOs have come together to tackle this problem collectively by raising awareness, establishing vital services, and pushing government for legislative change. Our activities and services are as follows:

  • Raise awareness about dementia
  • Engage in community development
  • Offer dementia training and workshops to relevant stakeholders
  • Start support groups, counselling services, and a national telephonic helpline
  • Host special events (e.g. World Alzheimer’s Day)

In KwaZulu-Natal Dementia South Africa offers Dementia Training-of-Trainers for social workers and other people working in the field of dementia. We equip them to become dementia trainers whereby they present the ‘Caring for the person with dementia’ curriculum to groups in their respective areas. They are also ambassadors for the cause and are tasked with creating awareness of dementia in their communities.

Conclusion

Unfortunately in South Africa there is still a stigma attached to dementia, and it is often denied or ignored.  It would appear that it is up to civil society to actively find ways of lobbying and advocating government to have dementia declared a National Health Priority and to develop a dementia strategy.  Although the above-mentioned services are important and help to create awareness, there are many communities in South Africa who will only be reached if the major role-players get together to discuss and develop a National Dementia Plan.  


P.O.Box 16421 Cape Town Vlaeberg Western Cape South Africa


 021 421 0077


In Short

This learning brief answers the questions of what dementia is, how it affects South Africans, how it can be managed, what is being done about it in the country, and the challenges facing these efforts. The aim is to highlight the cause in brief and to point out the need for greater, immediate action regarding this issue.


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