Kindly provided by Alzheimers New Zealand
Alzheimer's New Zealand commissioned research from Litmus, an independent research company, to understand the experiences of people living with dementia.
This is our story: A qualitative research report on living with dementia tells the story of 49 people with a diagnosis of dementia and their supporters. Encounters with GPs featured strongly in their stories showing how interactions with GPs can enable or disable people living with dementia.
Most of the people in the study found the process from initial GP contact to diagnosis as slow - a difficult 12 months or more. Some were told to come back in 12 months in what for them was a frustrating ‘wait and see’ approach. A family member noted, “diagnosing it earlier prevents more frustration, as you understand what’s happening.”
People had varying GP experiences at the diagnosis stage. People with positive experiences said the GP:
- Listened openly, was respectful, and gave them time to process information and ask questions
- Understood dementia, its treatment, and its impact
- Informed them sensitively about their diagnosis
- Offered advice relevant to the dementia journey stage
“We’ve had a good talk with doctors and various people. Got a fair idea. I certainly know what road I’m travelling down. I’m not at the end of it yet.” (Person with dementia)
Others had different experiences where interactions with GPs caused distress, for example:
- Not being listened to and their concerns being downplayed
- Being bluntly told they had dementia
- Being told their lives were over, and to go home and prepare for the end.
These people often changed GPs to one recommended by other people with dementia or sought help from other health professionals in the family.
[After diagnosis] “They [GP] signed me off – more or less. He didn’t want to see me anymore and just gave me some pills and said ‘there you go, not much we can do here. You’re not as bad as some, keep taking the pills and if it gets worse, come see us again’.” (Person with dementia)
Receiving a diagnosis of dementia deeply shocked the people in this study. People living with dementia described stages of grief and loss following diagnosis. People with dementia described learning to cope with and adapt to the progressive nature of the disease. Over time, most (but not all) people with dementia interviewed reached an acceptance of having the disease.
People with dementia talked about needing support through difficult times like diagnosis, dementia progression, and transition to residential care. They need time, information and support to make their own decisions. The GP and practice nurse play a critical part in helping people navigate the challenges presented by the effects of dementia and resulting lifestyle adaptations. The clinical pathway for dementia provides information guiding the diagnosis process through to referral and follow up support and services.
Immediate referral on diagnosis to the groups supporting people with dementia - local groups of Alzheimers NZ Dementia New Zealand - is essential. These organisations provide a wealth of expertise and programmes such as advisor input, education for people with dementia and family/whānau, peer support and therapeutic and social activities.
Alzheimers NZ’s information booklets also provide nationally consistent advice for people living with dementia across a range of topics – at diagnosis, when things get challenging, when residential care may be needed and end of life.
See Alzheimers NZ website for more information and contact details for local organisations around NZ.