Raising awareness about dementia through public education

It has most likely happened to us at some point. During conversation with (usually) an older person, you're exchanging information, answering and asking questions, and you explain that you're so and so's daughter and that you do X for a living. Two minutes later, you're hit with the question: So who are your parents? And what do you do?

You're taken aback. You pause, then you respond. This is likely to happen another two times, or so, during the course of the interaction. You catch the eye of someone else across the room. That person puts his index finger to his head and makes air circles and shrugs. You nod with understanding and begin to extricate yourself from the conversation with apologies and excuses of needing to speak to someone else.

You walk away, shaking your head with pity and maybe a little fear, fear that someday you'll succumb to the inevitable fate of failing memory as you age. Words like senile and Alzheimer's and dementia swirl around in your mind and you pray that you escape such a fate.

Or you have a family member with failing memory and declining cognitive skills and you discuss in hushed tones the fate of your relative, keeping the conversation confined to a select few who understand even without it being said that not a word about the relative's condition is to be uttered outside of this circle. The silence, the avoidance, and the assumptions we make form the stigma associated with dementia.

 

Four things you should know about dementia

 

Dementia is an overall term that describes a group of symptoms that come with a decline in memory or other thinking skills. Dementia is NOT an inevitable part of ageing. It is a disease of the brain.

Dementia is progressive and starts out with mild symptoms mainly confined to memory loss. Functions that become impaired because of dementia are memory, communication, and language, ability to focus and pay attention, reasoning and judgement, and visual perception.

Alzheimer's is only one type of dementia. It is the most common type of dementia, though. It causes problems with memory, thinking, reasoning skills, behaviour, or mood. Persons living with Alzheimer's may eventually not be able to tell the time anymore, count money; or recognise where they are. They may experience personality changes.

We don't know what causes dementia, but we do know that living a healthy lifestyle can reduce the risk of developing dementia and that the earlier the diagnosis, the better the chance to intervene with medication that can alleviate the symptoms. Non-drug therapies can also alleviate some symptoms of dementia. These include making the person living with dementia as comfortable as possible, simplifying routines, and treating them with respect and understanding.

 

Why challenge stigma?

 

Stigma surrounding dementia and Alzheimer's is a barrier to getting treatment and care. People don't like to admit to failing memory for fear of employer victimisation, reduced access to health insurance, judgement from others as to total worth, and loss of control. It is important to remove the stigma that surrounds dementia in order to make it easier to confront what is a disease like any other disease and get early intervention that can significantly improve the quality of life for persons living with dementia.

 

Jamaica's Response to Dementia

 

October 1 was recognised as the International Day of Older Persons, and September was recognised as World Alzheimer's Month. This is an international campaign to raise awareness and challenge stigma against persons living with dementia. Last year, more than 80 countries participated in World Alzheimer's Month activities, and this year, Jamaica was proud to be one of them. We're not sure just how many persons there are in Jamaica living with dementia. There is one study that estimates that in 2010, there were 19,000 persons living with dementia and that by 2030, this number could increase to 31,000.

The newly revived Alzheimer's Jamaica organisation exists to help persons living with dementia to understand what they are going through and to provide support to their family members who may also be struggling with the illness. Alzheimer's Jamaica is currently lobbying with our minister of health for our Government to push for dementia to be incorporated in the UN's Non-communicable Disease (NCD) Agenda.

Treating dementia as an NCD - which it is because it is a chronic illness - will enable us to allocate more resources and attention to this issue, similar to what we see happening now with diabetes and hypertension. Alzheimer's Jamaica aims to raise awareness about dementia through public education and reducing stigma by encouraging people to talk more openly about dementia and Alzheimer's disease.

 

Are you a caregiver for someone living with dementia?

 

Remember that the disease is progressive and each person living with dementia is still a unique human being where the disease presents differently. Get the facts about the disease. Understanding the reasons for the changes you observe will help you to be more tolerant, patient, and understanding. Remember that some days are better than others for the person living with dementia, so be patient when you are tempted to think that your charge is simply provoking you or just trying to be difficult.

Watch your language. Avoid statements that rob persons living with dementia of their dignity and humanity. Don't make jokes about the disease and its effects.

Treat people with dementia with respect and dignity. A person's ability to do things we take for granted will change as the disease progresses. But no matter what stage of the disease, always remember that you're still dealing with a human being with unique abilities and needs. Don't talk around them and keep including them in family and social gatherings. Let persons who will be at these gatherings know what is happening so that they can be sensitive but not condescending.

 

What can you do to prevent dementia?

 

Improve diet and nutrition - Eat healthy (fruits, provision, vegetables), drink more water and fewer sugary drinks like soda.

Get good sleep - Try to have a routine to help you get to bed. Try to go outside and get some fresh air during the day, which will help you fall asleep at night.

Stay socially active, especially if you are retired and are at home. Get active at church, volunteer with AlzJA, continue with your hobbies, or start a new one, and try to stay in touch with family and friends.

Regular exercise - The Jamaica Moves programmes is helping persons appreciate the importance of exercise and how much fun it can be. So try different things like sports, running, swimming - just increase your blood flow.

Reduce stress and anxiety - by engaging with nature, making time for relaxation and self-care, or just getting some quiet time for yourself.

Challenge your brain - Learn something new like a new language (for free on YouTube) or a new musical instrument. Play word games. If you don't use it, you lose it!

- Please visit Jamaica Alzheimer's website at www.alzheimersjamaica.org and go to our 'Get Involved' page to learn about becoming a member or volunteer. You can also email info@alzheimersjamaica.org or follow them on Twitter @alzheimersja.