Leanne Bolton, has interviewed three people with young onset dementia (diagnosis before turning 65 years) to add to the limited amount of New Zealand research on the needs of people and their their family and whānau
“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,” said Bolton.
She said 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,” said Bolton. “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. “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.”
Bolton said young people with dementia were 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.
Bolton began her Masters in 2012 while employed as a palliative care nurse and then clinical nurse specialist at Mary Potter Hospice in Wellington.
She currently holds two casual nursing roles 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.
She presented at the recent Alzheimers New Zealand Conference.