"Give them the information that they need to go forward.”
By Lara Hitchcock. Published on 13/5/2020
Memory clinic nurse Lara Hitchcock asked people living with dementia and their supporters about what information they wanted at diagnosis. Here Lara shares the results of her study.
We all need appropriate information to make sense of our health and well-being. Receiving information can, according to the WHO and the NZ framework for dementia care improve the quality of life of those living with dementia and their care partners. Getting a diagnosis of dementia is hard but can be made easier when you know what you are dealing with. However, meeting individual information needs is tricky for health professionals as the amount of information wanted, the format presented and where the information is given varies from person to person.
There has been little international and no NZ research on this topic, especially from the perspective of people living with dementia. So, I decided to explore what information people wanted at diagnosis to inform and guide clinical practice at our Memory Clinic.Six randomly selected people with dementia and their care partners kindly shared their story of getting information when they were told they had dementia.
For many care partners questioned, the health professionals attitude impacted on whether the experience of gaining information was positive or negative. Those living with dementia were less concerned about the attitude of information giver but valued information presented in a clear and easily understandable way. There were some living with dementia who felt that their preferred mode of receiving information about dementia was from their care partner.
As expected, the information needs of those asked varied regarding amount, format and environment. However, many care partners and people with dementia asked wanted more information about disease progression at the mild stages of dementia to plan for the future.
Many care partners highlighted significant carer stress and stigma and, despite finding the local dementia organization beneficial for support and information, they wanted ongoing specialist follow-up.
This research has impacted on how we give information to those newly diagnosed with dementia and their care partners at our Memory Clinic. It was highlighted that some people living with dementia and most care partners want more information on their diagnosis. It is therefore essential that healthcare professionals identify, be flexible and respond to, the individual’s information needs. Many care partners, even in the mild stage, experience significant carer stress, and want ongoing information to enable them to meet the changing needs of the person with dementia throughout the dementia continuum, especially if they are the primary information broker for the person with dementia. Dementia is a global epidemic. Meeting information needs can reduce carer stress and improve the quality of life of people with dementia and enable care partners and people living with dementia to live well.
About the author
Lara Hitchcock is a registered nurse in Canterbury District Health Board’s Memory Assessment Clinic at Burwood Hospital. You can read the full version of Lara’s research: click here