The New Zealand findings from the 2019 World Alzheimer’s Report survey on Attitudes to Dementia are presented in the table 36 (ADI, 2019). These show that there is still a way to go to address some of the preconceptions and perceptions held about dementia.

Table 36: NZ survey results on Attitudes to dementia (ADI, 2019)

	General Public (%)	Healthcare professionals (%)	Caregivers (%)
PwD perceived as dangerous	9.2	9.5
I would keep my dementia a secret	23.0	11.0
Remove family responsibilities from PwD	44.1	46.9
PWD are impulsive and unpredictable	65.6	47.5
Best to move PwD to a nursing home even against their will	23.0
Adequate community services	31.2	29.6	29.9
Competent HCP for diagnosis and treatment	67.3	51.5	52.1
HCP ignore the PwD	35.8	43.9	17.0

 

Alzheimer’s NZ commissioned a telephone survey in 2017 to explore awareness and understanding of dementia in NZ (Alzheimer’s NZ, 2017). The focus of the survey included:

• Self-assessed knowledge of dementia.
• 54% of respondents said they knew ‘a lot’ or ‘a fair amount’ about dementia with those who were female, older, better educated, or who had a family member with dementia (80%) were more likely to do so.
• Pacific respondents were less likely to say they knew much about dementia (21%) compared to other ethnicities.

Attitudes to people with dementia:

• 87% of respondents agreed people with dementia can become isolated from friends and the community.
• 83% agreed people with dementia can still be involved in activities in the community such as attending a wedding, church, social clubs, or other social events.
• 58% agreed people with dementia can still enjoy life to the fullest.
• 87% said they would continue to include someone in social activities if that person was diagnosed with dementia.
• 10% said they would not want to tell people if a family member was diagnosed with dementia and 27% agreed they would find it hard to talk to someone with dementia.
• Pacific respondents were less likely to agree (66%) that people with dementia can become isolated from friend and community, than the overall (87%).

Attitudes to caring:

• 58% agreed caring for someone with dementia is often lonely.
• 50% agreed that caring for someone often means your own health suffers. Those 60 years old and over had higher agreement on carers being very lonely (70%) and their health suffering (60%) compared to their younger counterparts (54% and 47% respectively).
• Those who know or have known someone with dementia were more likely to agree caring for someone with dementia can often be lonely (61%) than those who did not (45%). In particular, those who know or have known an immediate (parent/sibling/partner/child) family member were more likely to agree with (75%).

Knowledge of risk and prevention

• Respondents were also mostly confident that eating a healthy diet (75%) having an active social life (67%), maintaining a healthy blood pressure (62%) and not smoking (60%) reduced the risk of dementia.
• Respondents concerned about getting dementia had particularly high confidence for maintaining a healthy blood pressure (69%), having an active social life (72%) and doing mentally stimulating things (90%).
• 27% thought dementia was a normal part of aging and the same number said they thought dementia can be cured.
• 16% of respondents incorrectly identified dementia as a disease that can be inherited.
• Pacific (58%) and Asian (49%) respondents were more likely to think dementia can be cured than other ethnicities (25%).

A recent study by Dudley et al., (2019) explored the understanding of mate wareware (dementia) from a Māori perspective. The study noted the general tolerance and acceptance of a whanau member with cognitive difficulties and importance of honouring their identity as kaumatua (elders) of the community.

Cheung et al., (2019) have recently explored the attitudes of Asian communities in NZ to dementia. They identified specific cultural interpretations of dementia in this community including framing it as a normal part of ageing, using folk explanations (e.g., having a “ghost in the brain”), as well as the use of pejorative or negative terminology for the disease such as “older person’s crazy disease” or “stupid”.

Similar findings have been seen in Pacific communities in NZ (Kautoke, personal communication) with dementia conceptualisations ranging from a neurological condition to spiritual explanations. As with the Asian findings, there were many pejorative terms used to describe dementia such as “fakasesele” (crazy) and ‘’atamai vaivai” (weak minded).

References:

ADI. (2019). World Alzheimer Report 2019: Attitudes to dementia. Alzheimer’s Disease International. Available from: https://www.alz.co.uk/research/WorldAlzheimerReport2019.pdf.

Alzheimer’s NZ. (2017). Awareness and understanding of dementia in New Zealand 2017.

Cheung G., Appleton K., Boyd M., Cullum S. (2019). Perspectives of dementia from Asian communities living in New Zealand: A focus group of Asian health care professionals. Int J Geriatr Psychiatry. 34(12):1758-64. https://doi.org/10.1002/gps.5189.

Dudley M., Menzies O., Elder H., Nathan L., Garrett N., Wilson D. (2019). Mate wareware: Understanding ‘dementia’ from a Māori perspective. NZ Med J. 132(1503):66-74. Available from: https://pubmed.ncbi.nlm.nih.gov/31581183/.