Not knowing what to expect I went to this conference with an open mind – I learned a lot. Many of the speakers were people with dementia together with families who walk alongside them in their journey, a journey which starts with the discovery that a spouse, parent, family member, friend or they themself is displaying signs suggesting there may be a problem with their cognitive behaviour.
The next step is a visit to the GP who may order some cognitive tests to be carried out followed by a referral to a specialist for diagnosis. This all takes time.
During this period, the person suffering from the illness can begin to lose his or her identity. He or she may start losing confidence and close family members may be shunned. Friends and family seldom know how to deal with the situation.
As members of the human race, we need to remember that these loved ones are still the same people they always were. They enjoy life and want to socialise without judgment.
They want others to treat them as they always have and not put them in a box defined as, ‘she/he has dementia, you know’. Sufferers already know as they live with it every day!
Those with the disease do not want to be labelled as ‘non-persons’ just because they are cognitively impaired.
Colleen and I learned a lesson which should be obvious but sometimes isn’t – don’t feel sorry for sufferers, embrace them and their loved ones. They all need, and deserve, our genuine support.
Seven individuals suffering from dementia had the courage to stand up at the conference and offer the following – We live our best lives:
- When we are enabled
- When we have someone to navigate us through the health system
- When we socialise with others who suffer from dementia; they know what we are experiencing
- When we continue to do those things we enjoy
- When equitable resources are available allowing us to stay in our own home
- When I am still seen as a person in my own right – I am still me!
