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It’s not just the elderly: Understanding younger onset dementia

For most of us, when we think about people living with dementia we think about the older members of our community. And while most people with dementia only begin to develop symptoms after they reach the age of 65, for some people the signs begin much earlier.

Younger onset dementia affects roughly 5% of people living with dementia. The symptoms and signs of early onset dementia may vary from those seen in older people with dementia. Younger folks are less likely to experience memory loss than older people with dementia, but there are many other signs to watch for, from confusion and disorientation in unfamiliar situations to changes in personality and behaviour to difficulty in communicating.

Some forms of dementia, such as frontotemporal dementia (FTD), generally begin to show symptoms earlier than other more common forms. This can make it much more difficult to diagnose and symptoms are often mistaken for menopause, depression, schizophrenia or other conditions that affect behaviour.

People with younger onset dementia have to deal with a unique set of challenges. They are often still working, raising a family and have greater financial responsibilities than older people living with dementia. This is certainly true for many of the 95 people living with younger onset dementia who are currently supported by Dementia Auckland.

Amrita’s story

Amrita, for example, was only 58 and working as a music teacher when she first started to show symptoms.

“My wife Amrita and I were living in Qatar with our son Sanesh when the first warning signs started appearing in Amrita’s behaviour,” shares Amrita’s husband, Martin. “She began demonstrating some eccentric ways of thinking, and would do things like wear her clothes inside out.”

Initially, the cause went undiagnosed as the usual tests for someone her age showed no signs of illness. When she was eventually diagnosed with Alzheimer’s, Amrita tried to go back to teaching but ultimately had to leave her 33 year career in teaching.

“Coming back to New Zealand, she was still keen to continue teaching if possible, but again, the deck was stacked against her and she wasn’t able to start the role she was initially offered.”

“Our battle began. With support from WINZ and Dementia Auckland, however, we started to make progress. The CST (Cognitive Stimulation Therapy) programme was a major breakthrough, and I was thrilled to see some real change in Amrita and the others in her group. Harnessing her love of music has also been important, with plenty of opportunities provided for her to play the piano – whether at home, at retirement centres or at the Papakura Salvation Army, where she volunteers, or a Toastmasters meeting that she attends every second Thursday.”

Being diagnosed with younger onset dementia can place an unexpected emotional and financial strain on partners and families. Having access to support makes a world of difference to people like Amrita and her family. With the help of Dementia Auckland, Amrita still has plenty of opportunities to share her gift for music with her community.

Dementia Auckland also operates a support group for the carers of people with younger onset dementia called The Young Ones, of which Martin is a part. It provides a welcoming space for people to share their experiences and seek advice about the challenges they are facing.

About Dementia Auckland

Dementia Auckland
Dementia Auckland is a not for profit organisation dedicated to providing dementia support services and inspiring those living with dementia to make the most of life. Dementia Auckland provides a wide range of services and support across the greater Auckland region. Dementia Key Workers offer intensive support and practical strategies for the carer of a person with dementia, including home visiting, telephone consultations, and support groups. Visit www.dementiaauckland.org.nz for more info.

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