Category: Inclusive, Enabling Communities | Older persons | 9 January, 2015 - 17:39← BACK
About Dementia SA
Dementia SA is committed to providing innovative services and support in South Africa to address the challenges faced by people with dementia, their families, and their carers. We aim to strengthen community awareness and understanding of all forms of dementia, and advocate for training and education in ageing communities. Dementia SA was formally registered in 2006 as a non-profit organisation in South Africa and also holds (501(c)3) status in the USA and is recognised by the UK Charities Trust.
Dementia SA’s work is equally split between advocacy, training and provision of support. The core services include a national helpline, family counselling, advocacy, provision of support and training. In KwaZulu-Natal, our organisation offers Training-of-Trainers for social workers and other people working in the field of dementia. We equip them to become dementia trainers where 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.
Through this training and advocacy work we have learnt about the importance of working with credible partners and committed social workers.
1) Establish a relationship with a credible, local partner NGO that is well known and respected for delivery and service in the area. This partner organisation must understand the importance of dementia awareness and support your cause. Build a good open transparent relationship with this partner NGO in order to have the training and awareness work properly. Ask the partner NGO to help you gain a better understanding of the community.
2) Ensure that you work with committed social workers. We have learnt that many social work students do not want to work in the rural areas; they see their higher education as a way out of poverty and rural life and they seldom wish to return to such settings. Work with your partner NGOs to recruit reliable social workers that desire to work in rural communities.
We have also learnt about logistical challenges that occur when running training programmes in remote rural areas.
3) Distances and time are real challenges that must be accounted for and factored into all scheduling and programme planning. Calculate the financial and time costs of flying versus driving. Remember that in remote areas roads are bad, and short distances can take a long time to cover by car. For example, the distance from East London to one of our training sites, Madwaleni, is only about 350 kilometres but it takes 5-6 hours to get there due to the poor roads, and presence of animals and people walking on them.
4) Lack of suitable resources to accommodate and host trainers is also a challenge. For example, some of our training sites are far from shops, hotels, printing and training facilities. Therefore, we have learnt the importance of planning in advance and stocking food, stationary, and training materials (batteries, pens, paper, etc.) before leaving for the field. If trainers are flying to a destination they may need to pay for extra baggage. These expenses must be factored in during the planning stage.
Next, we learnt about dealing with cultural protocols and issues of safety for our trainers.
5) In many rural communities, cultural protocols need to be followed before conducting training as an outside organisation. It is vital to first get welcoming “approval” from the appropriate gatekeepers (these may be headman, ward councillors, political or traditional authorities, or even administrative bureaucrats and clinic staff). Allow enough time for the local groups to develop trust and have meaningful input and ownership of the project.
6) Ensure that your trainers work in a safe environment and know what to do if they encounter difficulties. They may be exposed to crime, resistant authorities, and even dangerous wildlife, like snakes. Trainers and fieldworkers must work in pairs for this reason.
Finally, we learnt about developing appropriate data collection instruments and awareness raising strategies.
7) When Dementia SA first visited the Madwaleni and surrounding communities, we were told that dementia did not exist in the area. But our experience has taught us that people can suffer from Dementia in every group and society. After raising awareness about the condition through public events and training sessions people began to recognise and identify dementia cases. Now we frequently hear about huts with older persons that potentially have dementia, or younger persons with AIDS Dementia Complex.
8) Our initial data collection instruments used to identify people with dementia were too long and detailed. We soon learnt that we needed to change these. The volunteers and community health outreach workers were not prepared to compromise their good relationships with the community members by undertaking such lengthy questionnaires. Furthermore, the target population (older persons) were not prepared to sit for long periods of time answering questions. As such, we shortened the survey.
Our plans for the future
Dementia SA is developing teaching modules in specialised care and support for those affected by dementia. We are urgently translating the materials into all 11 South African languages. Our organisation has effectively demonstrated its capacity and ability, and we are now confidently well placed to expand the programme throughout the Eastern Cape and to roll out it in other provinces. We would also like to produce a short video on caring for someone with dementia that would be culturally sensitive for rural communities in South Africa.
Through our training and advocacy work in rural South Africa, we have learnt valuable lessons that we shared in this learning brief. Our experience highlights the importance of working with credible partners and committed social workers. We have suggested ways of dealing with the logistical challenges, cultural protocols, and issues of safety that occur when running training programmes in remote rural areas. And lastly, we have shared what we’ve learnt about developing appropriate data collection instruments and awareness raising strategies for dementia, before discussing our plans for the future.
P.O.Box 16421 Cape Town Vlaeberg Western Cape South Africa
021 421 0077
Through their training and advocacy work in rural South Africa, Dementia SA has learnt valuable lessons that they share in this learning brief. Their experience offers insightful suggestions for working in remote communities, and suggests ways of dealing with the logistical challenges, cultural protocols, and issues of safety that occur when running training programmes in remote rural areas