The Importance to Carers of Early Diagnosis of Dementia

A dementia diagnosis can be difficult to comprehend and understand, for both the person who has been diagnosed and their family. This guest blog has been written by Dianne Stewart, chair of Carer Support and member of the Alzheimer Australia’s Consumer Interest Group. She writes about the benefits of an early diagnosis of dementia from her [a carers] perspective.  

The many challenges facing a person living with dementia are also thrust upon family carers who share the journey with them. Without their carer acting as an enabler, the person with dementia would have limited opportunity to access necessary services, participate in social activities or remain in their own homes. Unfortunately, sometimes carers fall into the frail aged category themselves. Financial strain, the loss of independence, behavioural changes, altered marital relationships and social isolation have far reaching effects on the quality of life for family carers as well. If dementia is diagnosed early, the person has a starting point for medication and coming to grips with the situation while they are still able to understand the changes taking place. As many spousal carers are elderly, early intervention may also help them to accept the situation before their partner’s needs accelerate to a point where they are unable to cope.

An early diagnosis gives the person with dementia who manages household finances and household maintenance, or cooking and domestic duties the opportunity to gradually hand over these tasks to their partner. A couple may decide to bring forward a holiday or some other event they had planned for later on. Day centres and cottage care can provide much needed time out, giving the carer a break so they can cope with their loved one remaining at home for longer. Short periods of respite may be more attractive to both the patient and their carer than blocks of residential respite. If the person with dementia knows he/she will lose their drivers licence eventually, they may learn to drive a gopher while their brain is still receptive to learning new skills. Perhaps their carer may need to refresh driving skills if they are used to being the passenger.

Sometimes friends from a former life lose touch or mixing with them becomes too hard. Meeting other people with memory loss or dementia in the early stages promotes a gentle way of acceptance. New friends with similar challenges often step in to fill the void. This is also true for carers of people with dementia, who often form lasting friendships with their peers. The benefits of social interaction via clubs, activities and friendship groups are well documented. Attendance at day centres that incorporate physical exercise and memory training helps keep brains active in the fight against dementia. People who attend cottage respite and day centres are more amenable in accepting longer term respite or permanent placement when it becomes inevitable. The world we live in increasingly requires documentation for our medical and lifestyle needs. Early diagnosis allows the person to put plans in place while they are still able to understand the outcomes. Without written directions, the stress on families and potential legal fees create enormous problems. An early diagnosis may encourage couples to move into accommodation, catering to their progressing needs, thus avoiding upheaval at a later stage. As well as providing familiarity for the person with dementia, it also sets the stage for their partner to form new friendships with neighbours.

A person with younger onset dementia has unique needs, especially those under the age of 65 who are not eligible for aged care services. They may still be employed, have a working spouse and/or children still attending school. Early diagnosis can help in planning for the family’s future direction and security. I think the biggest obstacle to dementia awareness is the perceived stigma attached to the disease. Many people still consider dementia to be a mental illness or those living with it to be dangerous. Education, through traditional and social media and word of mouth is vital to reduce the perception of shame. In time, the acceptance of, and compassion for, people with dementia could reach the same level as people suffering from other incurable conditions.

Carer Support helps sustain carers in their role by providing information, support services and opportunities for carers to meet others who experience similar challenges. Outings, activities and events are sometimes a lifeline to carers who may be feeling overwhelmed by their dementia journey. We need to break down barriers when it comes to understanding dementia so that our ageing population is not fearful if they are diagnosed, but actively seeks out positive ways of fighting the disease. Early diagnosis and intervention is the best way this can be achieved.


Original article sourced from the Carers Support Spring Newsletter with permission: http://www.carersupport.org.au/about-us/news-a-media/latest-newsletter

For more information about dementia and the next steps when diagnosed with dementia please visit our website https://fightdementia.org.au/ or ring the National Dementia Helpline on 1800 100 500

For more information about Carers Support please visit - www.carersupport.org.au


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