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Investigating the impact of young onset dementia

Dementia is often seen as a disease of the elderly, however the young onset of dementia (diagnosis prior to the age of 65 years) is a healthcare reality which poses a unique set of challenges for people, as well as their family and whānau.

There is a limited amount of research specific to the needs of people with young onset dementia in New Zealand, especially research that includes the voices of the people themselves.

Now, Massey University Master of Nursing student Leanne Bolton is exploring the experiences of people with young onset dementia. Ms Bolton, a specialist palliative care registered nurse interviewed three people with young onset dementia, recruited with the assistance of Alzheimers New Zealand.

“The interviews took place in the participants’ own homes, enabling them to have a conversation in a safe environment about what matters most to them now and in the future,” Ms Bolton says.

Three themes emerged from the data – the challenges of obtaining a diagnosis; of conserving personal relationships; and maintaining purpose.

“Participants emphasised how the love and support from their partners was fundamental to their desire to remain active members of the communities they belong to,” Ms Bolton says. “However, all participants broached the long-term implications of dementia, specifically the burden of care on existing long-term relationships.”

A personal sense of loss and related frustration following a dementia diagnosis was evident throughout the interview process from all three participants, despite their individual dementia story, she says. “However, this loss and frustration was almost overshadowed by the realisation of a finite time to continue living their own lives. This challenge was positively embraced by all three participants as an opportunity to do more with the time that was available and a commitment to do more with the life they still had to live.”

Ms Bolton says young people with dementia are capable of facing adversity when given the chance to fulfil their own needs and preferences. “Future service development for people with young onset dementia in New Zealand requires flexibility and a commitment to support the individual within their own community and must stand alone from the current late onset dementia structure. Further research is required to understand the specific needs of people 65 years or less with a dementia diagnosis in order that services can be tailored accordingly,” she says.


Ms Bolton graduated with her Bachelor of Nursing in Wellington in 2011. A Massey Scholar, she began a Master of Nursing qualification in 2012 part-time, while employed as a Palliative Care Registered Nurse and then Clinical Nurse Specialist at Mary Potter Hospice in Wellington.

She currently holds two casual nursing roles which allows for a flexible work/life balance - working remotely from home as one of a team of Clinical Nurse Specialists who coordinate the after-hours phone advisory service for Hospice West Auckland, and on call as a Hospice@Home palliative care nurse for Mary Potter Hospice in Wellington.

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