The young business voice Exploring the experiences of people with young onset dementia

This project was reviewed and approved by the Massey University Human Ethics Committee: Southern A, Application 17/34

Research Design: Participants have a diagnosis of dementia and an awareness of that diagnosis be able to verbally communicate their experience in English be able to indicate that they understood the purpose of the study, the nature of the research process and the time commitment involved provide written or recorded verbal consent

Research Design: Questions Tell me about your experience of having been diagnosed with young onset dementia. What matters most to you now? and for the future? Do you know what support is available to you? What support would be most useful to you now? What support would be most useful in the future? Is there anything else you would like to say?

CONSERVING personal relationships MAINTAINING purpose Results: Three themes OBTAINING a diagnosis CONSERVING personal relationships MAINTAINING purpose

Obtaining a diagnosis negotiating a complex pathway

Obtaining a Diagnosis “ It was suggested that I had filled my life up too much and needed to take more time to relax – this was a very valid point, which I did take on board…so, I made changes.”

Obtaining a diagnosis “ In my case my memory problems were most likely to have been caused by a combination of wearing my brain out through stress and adverse effects of long-term medication.”

Obtaining a diagnosis “something happened that really concerned me…I contacted Alzheimers New Zealand branch, and the field officer was able to give me the names of a number of Doctors [General Practitioners] that she felt would be understanding…I was referred to the hospital – Mental Health Services for the Elderly…scary! At 57, that wasn’t quite how I saw myself…anyway, I had all the testing, a million blood tests and an MRI scan and subsequently met with a neurologist who broke the good news to me.”

Obtaining a diagnosis negotiating a complex pathway

Obtaining a diagnosis “ I have had no further contact from either the GP, or from the Mental Health for the Elderly Services at the hospital since my diagnosis. I am unsure if this is normal, but I am quite surprised to be honest.”

Obtaining a diagnosis negotiating a complex pathway

Obtaining a diagnosis “Even though this was exactly what I was expecting to hear, it was definitely still distressing…I literally cried the whole way driving back to work.”

Obtaining a diagnosis “ I want to start preparing in plenty of time for what is to come, and to have the necessary things in place. I think having a plan, or at least an outline of a plan in place in the not to distant future, would be a really good idea.”

Conserving relationships “You start feeling that you’re a burden to people”

Conserving relationships “The relationship with my wife [matters most], because we’re going through a wee bit of a growth again.” Participant 1 “What matters most? Support from my wife. Our kids. Our granddaughter.” Participant 2 I want to continue being supported by my loving family…and I have no doubt this will happen.” Participant 3

Conserving relationships “ And that’s why it all gets a bit frustrating for her (wife) I think, because we don’t get out and do things like we used to, you know, just even smaller things at times, which makes it hard for her.”

Conserving relationships “ One of the things that does hang over me a bit is what I’ve seen with other people down through the years with any sort of disabling situation is that, the partner, the other half, gets worn out…I feel bad about that. [Pauses] I suppose that makes me human.”

Conserving relationships “You start feeling that you’re a burden to people”

Conserving relationships “It makes me feel sad. I feel it affects me… I think people need more information about dementia.”

Conserving relationships “You start feeling that you’re a burden to people”

Maintaining purpose

Maintaining purpose “I want to continue doing my job, which I really enjoy, for as long as I can. My employer has indicated to me that they will do their utmost to keep me in my current role for as long as they can. Currently I am having no issues doing my job…it’s learning and maintaining new information that is problematic for me.”

Maintaining purpose

Maintaining purpose “ I remember going to that one [day group] out at the café. I can play cards …but this…I didn’t know what it was. It looked like a big hole, a big bumble of cards and stuff…so it didn’t work. And it felt like going down in a bucket…”

A “wanted” advertising campaign Maintaining purpose A “wanted” advertising campaign

“…a personal driver…just someone you can feel safe with…” Maintaining purpose “I’d like to find someone to take me fishing again, that would be good. I can remember that much…and for me that is important, because it lifts your own sense of worth.” “…a personal driver…just someone you can feel safe with…”

Maintaining purpose “if I could keep that going every day in my life, I’d be a different person.”

CONSERVING personal relationships MAINTAINING purpose Results: Three themes OBTAINING a diagnosis CONSERVING personal relationships MAINTAINING purpose

“I want to do more with my life… I want to be remembered for something”

Limitations small number of participants partial societal representation novice researcher

Recommendation A commitment from the sector for diverse dedicated research involving people with young onset dementia in New Zealand

Investigate barriers to a timely diagnosis of young onset dementia Recommendation Investigate barriers to a timely diagnosis of young onset dementia

Recommendation Ensure age appropriate service development for people with young onset dementia

“Where to from here?” Participant 3