Heather Rauch is a clinical social worker and health practitioner from Gqeberha with a PhD in social work. She is widely known for her care of people who have Alzheimer’s and other forms of dementia, and their families.
On 21 September, it is World Alzheimer’s Day. Izak de Vries asked her a few questions.
You once said that Alzheimer’s is a family disease; it does not affect only one person. Why did you say that?
Indeed, it is a family disease, because as the person living with dementia becomes increasingly dependent, the family members and carers are increasingly affected and need to step in more and more to help their loved one. The family also start to grieve the loss of who their loved one used to be. They are also affected because the roles in the family change, for example, the children take on the parent role, or the spouse becomes the carer.
May I ask for a simple, clinical definition of dementia?
Dementia is not a specific disease, but rather a general term for the impaired ability to remember, think and make decisions, which affects everyday activities. There are many types of dementia, Alzheimer’s being one of them.
Why is Alzheimer’s a “thing” if dementia can have other causes?
Alzheimer’s is a form of dementia, and it is diagnosed because it is a progressive disease where the brain atrophies, messages from the brain to the body are impaired, and the whole body’s functions are increasingly affected.
You work in a multidisciplinary team. You are a clinical social worker. What is the role of someone like you in supporting families and individuals affected by Alzheimer’s and dementia?
Yes, I believe so much in the team approach. In the early stages, my role includes assisting with the diagnosis and planning the way ahead. It involves supporting the individual and their family as they process the diagnosis and adjust to the impact of the disease on the family system, and walking the road with them all till the end of the life of the person living with dementia. The role can also include helping with care support, like home-based care and referral to a suitable care facility. It could also include the legal aspects, like curatorship and other end-of-life decisions. Furthermore, it includes engaging with other team members and ensuring a well-coordinated intervention plan.
Which other disciplines are part of your approach?
I like to include a psychiatrist, neurologist, general practitioner, occupational therapist, speech therapist, nursing sister, psychologist, pastoral carer and home-based carer, depending on the situation.
Why do you, and others, spend so much time on community awareness around Alzheimer’s and other forms of dementia?
Our communities don’t know enough about dementia. I think we avoid learning about it, too. We are all afraid of losing our minds. We need to help address the stigma attached to the disease and lobby for effective treatment for those affected. Some cultures, due to a misunderstanding of the presenting behavioural symptoms of people living with dementia, treat them badly or even abuse them.
You also work with faith-based communities like churches. Why?
The church can serve as a helpful support (obviously with spiritual help, but also with practical help) to the family system. Also, the church can play a role in identifying folk who are presenting with symptoms, and to get them linked with the right help.
I am in my late fifties. Should I be aware of Alzheimer’s and dementia?
Absolutely. We need to look after our brains, just like we should care for our physical health; we are a whole person. A healthy diet is critical for good brain health, and then appropriate cognitive stimulation is also very important. We also need to stay involved and socially connected with others, as isolation is not good for our cognitive well-being.
Let us say that someone who is worried about dementia in themselves or a family member reads this: what should such a person do and not do?
If you are worried, get yourself checked out. Don’t leave it. The earlier the disease is diagnosed, the better. While it can’t be cured, it can be well managed, and there are interventions that can help slow down the progression of the disease. Also, one needs to exclude other illnesses that present with similar symptoms and which can be easily remedied.
I often forget where I put down my keys, or the name of someone I have met, but I can still live a full life despite simple lapses like that. When should someone realise that they need help from professionals?
An important difference is that you may forget where your keys are or forget the name of a person, but once you have settled and gathered yourself, it comes back to you. A person living with dementia generally doesn’t know, as the disease progresses, that they have lost their keys or that they have not remembered the name of the person.
ADASA is the Association for Dementia and Alzheimer’s of South Africa. May those with questions get in touch with ADASA?
Absolutely. Look at our website, too, but certainly get in touch with us. We are represented in all the provinces of South Africa.
Can ordinary people, like me, with no special skills, support the work of ADASA in any way?
Yes, I think that if each person understood the term Alzheimer’s and the different forms of dementia, that would be a great start. I think that if each of us could help break down the stigma of the disease and encourage folk to get help as soon as possible, that would also be great. We are much more comfortable with physical illness then mental illness.
And lastly, monetary donations, no matter how big or small, are critically needed so that we can continue our work. Remembering ADASA as a bequest in your will would also be very gratefully received.
See also:
Ons raaiselpad met alzheimersiekte deur Elise Nel: ’n resensie