Claire Naffah It's Not A Disgrace - It's Dementia Interview

Claire Naffah It's Not A Disgrace - It's Dementia Interview

A new short film for the Spanish-speaking community designed to encourage acceptance of dementia as a medical condition - and not a normal part of ageing - has been launched via YouTube.

This is the latest in a series of films aimed at several non-English speaking communities in Australia to help de-stigmatise and promote awareness of the condition.

Maree McCabe, CEO of Alzheimer's Australia Vic, said the short films in the It's not a disgrace…it's dementia series addressed myths and stigma about dementia and the importance for families to seek support within their local service network.

"If people recognise dementia as a distinct medical condition, which it is, they may be more encouraged to seek out advice, assessment and support," Ms McCabe said.

"Those in the series that are already on our YouTube channel have proven to be very popular, having collectively been viewed more than 3,500 times by internet users in Australia and also around the world, in countries as diverse as Iraq, Sweden, Costa Rica and Cambodia.

"This demonstrates the real need for information about dementia out there in the community."

The short films feature carers of people living with dementia giving personal accounts, in their own language, of their experience, along with health professionals who talk about the condition.

"The short films are family friendly resources in dementia awareness and are available in Spanish, Assyrian, Croatian, Khmer and Ukrainian," Ms McCabe said.

The language-specific films are about 15 minutes in length and have English subtitles. The films can be found on Alzheimer's Australia's YouTube site at www.youtube.com/AlzheimersAustralia

The films add to the raft of resources in languages other than English produced by Alzheimer's Australia. Those resources include:
Helpsheets in 30 different languages available at FightingDementia.org.au
Dementia risk reduction Helpsheets in 21 languages can be found at www.yourbrainmatters.org.au
The Community Partners Program resources in Finnish, Lao, Romanian and Russian at FightDementia.org.au
The DVD Understanding Dementia is available in 11 languages through the Alzheimer's Australia Vic library.

The short films in the It's not a disgrace…it's dementia series, have been produced thanks to the Department of Health and Ageing (DOHA) and Ageing, Disability and Home Care (ADHC).
They were produced in partnership with Why Documentaries and the Multicultural Communities Council of the Illawarra.

Alzheimer's Australia Victoria is the charity for people with dementia and their families and carers. As the peak body, it provides advocacy, support services, education and information.

Almost 280,000 people have dementia in Australia. This number is projected to double by 2030.
National Dementia Helpline: 1800 100 500
An interpreter service is available

The film 'Dementia: Taking the next step' is now available online at www.youtube/AlzheimersVic with captions in Finnish, Lao, Romanian, Russian and English

Interview with Claire Naffah

Question: What is It's Not A Disgrace - It's Dementia?

Claire Naffah: This is a short film produced in various community languages with the aim to raise awareness, reduce stigma and dispel myths about dementia among communities.

The film features carers of people living with dementia giving personal accounts in their own language, about their own experience, along with health professionals who talk about the condition and emphasise on the importance of seeking help early.


Question: What inspired the idea for this video series?

Claire Naffah: There were a few factors that inspired the idea for this video series. Primarily, people did not know about the early signs of dementia. So while the disease was progressing people did not seek help at an early stage. Secondly, some community members believed that a person living with dementia is either mad or crazy or that it is a normal part of ageing, and this is not true. Dementia is not a normal part of ageing. Not every person getting old will have dementia. Thirdly, using social media (watching and hearing the carers as well as the health professionals speaking in community language) on DVD or YouTube to explain about dementia and how to seek help and support, was an extended strategy to reach communities.


Question: Why was it important to launch this video, on the public domain, in Spanish?

Claire Naffah: Launching this video on the public domain in Spanish will ensure that Spanish speaking communities (and they come from many countries) will be able to access information about dementia and support for people living with dementia, their families and carers. Some community members respond better to audio-visual information rather than print, in particular when language and literacy can be a barrier to accessing information. In addition, this video combines information about dementia, case studies, health professionals, carers stories, examples about home and community care, as well as a list of support services available.

An information video on the public domain is a great social marketing tool that ensures messages about dementia are reaching diverse communities and that they are not alone in this journey.

Question: What other films will we see as a part of the series?

Claire Naffah: This DVD has been produced in Arabic, Assyrian, Cambodian, Croatian, Serbian, Spanish, and Ukrainian. There is a prospect in expanding to other languages.


Question: What are the signs and symptoms of Dementia?

Claire Naffah: Dementia is an umbrella term for a group of symptoms that are the result of brain neurocognitive degeneration. The signs and symptoms vary depending on the type of dementia a person is living with. For examples, Alzheimer's disease is featured by memory loss and this is 60% of dementia cases, while Lewy body disease is featured by body shaking and tremors. Vascular dementia is predominantly featured by mini strokes in the brain, and fronto-temporal dementia is featured by lack of planning and insight. Each of the dementia types can have a multitude of features. There are other less prominent types of dementia.

However, every person will manifest dementia symptoms according to the type, and degree of progress of the disease whether it is advanced or early stage. Symptoms of dementia could be:
Loss of memory, depression, withdrawal and loss of interest in social or recreational activities, cognitive decline, sensitivity to light and colour, sensitivity to noise and crowds, sensitivity to clutter, decline in special orientation, loss of second language and reverting to mother tongue, change in behaviour, reverting to early childhood, repetitive questions, wandering, and other….


Question: What stigmas are associated with Dementia?

Claire Naffah: Because the person living with dementia behaves in a manner that is not integral to his/her usual self, the community considers this person to be deluded, possessed, crazy or mad. Some communities believe in superstitions and think that dementia is a curse, and that a person is demented because of a lack of faith in God.

Other stigma is Shame. The family hides the person living with dementia and do not declare this fact to their friends and acquaintances. This is because of social status as it tarnishes the reputation of the family. People will not visit a household where a person living with dementia resides, as they do not feel comfortable with a person who would talk non-sense or gibberish or behave not as their usual self.


Question: How does the video aim to addressed the myths and stigma surrounding Dementia?

Claire Naffah: The video hosts health professionals who explain about dementia as a brain disease and that it is a physical illness no different to heart disease. The health professionals state that people are not ashamed to declare they have high blood pressure, or cholesterol, or diabetes, but they fear to talk about dementia. The points emphasised in the video are:
Treat the person with dementia with respect and dignity
Have lot of patience, compassion and kindness
Validate what the person with dementia is saying
Normalise the behaviour and go along with the flowDementia is a chronic brain degenerative disease and the person does not have any control for what is happening in the body or in the cognitive decline
A person living with dementia can participate, and needs to participate in social and community life. This will enhance the wellbeing and moderate the behaviour or frustration of the person living with dementia.
Take time and communicate positively
It is healthy to take the person living dementia on excursions or join social activities
Carers can seek help and support at home and use respite services
Carers need to look after themselves equally


Question: What treatments are used for Dementia?

Claire Naffah: There is no specific medication to treat dementia. At a very early stage, if the disease is detected, there are some tablets that can slow the deterioration of the brain, but these do not stop the progression of the disease. They can only extend the shelf life of a normal functioning. Examples of tablets that are prescribed by the specialist doctor only: Reminyl (Galantamine) and Aricept. They come in different doses.

However, there are rehab therapies that can assist people living with dementia in regaining some minimal functioning. Some of these therapies are Montessori, Spaced retrieval, Music, Art, Gardening, Singing, Doll therapy, Intergenerational activities. But it is important to emphasise that these do not reverse the condition of living with dementia. They just help in behaviour management and enhance a sense of wellbeing.


Question: Is it possible to prevent Dementia, if so, how?

Claire Naffah: Because we do not know what causes dementia, we cannot prevent it. However, there are measures that can reduce the risk of dementia. These are:
Heart - Maintaining a healthy heart by lowering the levels of cholesterol and high blood pressure
Body - Looking after our body by having regular health checks, exercise, eating healthy and nutritious food, monitoring and managing diabetes
Brain - Exercising our brain by engaging in a variety of brain games, social activities, and developing social, physical, brain, artistic interests and managing stress.


Question: If someone believes they have signs of Dementia what should they do?

Claire Naffah: Immediately see your GP, get a referral to a specialist, seek support and help, and try to get as much information as you can about the support services that can cater to your needs and the needs of your carer and family.

You can also log on to Alzheimer's Australia website www.fightdementia.org.au and source out information about dementia and relevant services and programs, or contact the National Helpline on 1800 100 500.


Question: What's the main piece of advice you'd give someone who had been recently diagnosed with Dementia?

1. Claire Naffah: Contact Alzheimer's Australia National Helpline on 1800 100 500. For Interpreter service call 131450 and log on to our website www.fightdementia.org.au and download information and resources that are of great benefit and assistance.
2. Alzheimer's Australia provides a lot of programs, information and counselling to support newly diagnosed people with dementia and their carers. On site and telephone interpreters are available.
3. Develop a list of support services and USE them. There are professional services out there that can provide information and support for the person diagnosed with dementia as well as for the carer, family and friends.
4. Seek advice regarding legal matters such as Power of Attorney, updating your Will, and other decision making stuff for the best of your interest, when you are not able to make those decisions for yourself when dementia becomes at an advanced stage.
5. Engage the person recently diagnosed with dementia in decision making and in family activities and household tasks to maintain their independence and wellness.
6. A person recently diagnosed with dementia would still have some capacity to participate in a communal life.
7. Validate, normalise, be patient and keep things simple for the person recently diagnosed with dementia.
8. Develop resilience and coping skills and learn about strategies to communicate with a person living with dementia at home.
9. Learn how to look after yourself as a carer and seek respite.


Interview by Brooke Hunter