Dementia Friendly Ireland Research Report Dr. Ronan Glynn SPR Public Health Medicine DFI Reference Group 14 th June 2016

Systematic Literature Review National Survey Focus Groups

Literature Review

Review of the Grey Literature Other (non-dementia specific) Literature Planning a mass media campaign for dementia, UK Healthy Brain Initiative, USA Reminiscence Programme Intergenerational choir and social contact theory Changing Minds campaign, UK Prime Ministers Challenge, UK  Dementia Friends  Dementia Friendly Communities  Schools programme  Social Media  Evaluation Dementia Friendly Communities, DF Motherwell Dementia Without Walls, York Memory Cafes Community Conversations, USA Time to Change Campaign, UK Cochrane Review on use of mass media Review of the Academic Literature

10 Guideposts from our Literature Review 1.Strategic partnerships 2.Need for structure 3.Balance positive and negative messaging 4.Consider the audience 5.Distinguish between education and awareness 6.Mass media will not work in isolation, supporting initiatives are essential 7.Social contact – an assets-based approach 8.Plan evaluation 9.Avoid an excessive focus on ‘recruitment’ 10.Create a sustainable legacy – build on what is already happening

How big is the challenge?

Evaluate knowledge and attitudes to dementia among the general public Aim Literature Review National SurveyFocus Groups

● 1217 face to face interviews, carried out by B&A Consulting ● Representative sample of adults 16+ nationwide ● Over half (52%) knew someone living with dementia Survey details

Just 1 in 4 adults believe they have a reasonable understanding of dementia. 12% 24% 29% 31% 35% 42% Parkinson’s disease Alzheimer's disease Dementia Diabetes Asthma Depression Cancer A great deal Quite a lot Almost half of males felt they knew very little about dementia

Reasonable general knowledge Over 90% identified memory loss and misplacing things as signs and symptoms BUT only 1 in 3 confident that they could tell the difference between dementia and normal ageing Confusion about the relationship between dementia & ageing

People do not realise that there are things they can do to reduce their risk of dementia

Alcohol 45% Diet 46% High blood pressure 20% Smoking 28% Very poor knowledge of risk & protective factors for dementia Significant differences across socio-demographic variables but ALL demonstrated poor knowledge

Attitudes to Dementia

The positives People want to include people living with dementia “Do you think people with dementia should live where they won’t bother anyone?” “Would you try to avoid eye contact with someone if you thought they had dementia?”

The negatives People do not think society as a whole is inclusive of people with dementia “Most people in my community would treat someone with dementia just as they would treat anyone” “Most people would accept someone with dementia as a close friend” 1 in 2 agree

The negatives People tend to stereotype “Most people with dementia are irritating because they tell the same stories over and over again ” “Most people with dementia have poor personal hygiene” “You cannot expect complex and interesting conversations with most people with dementia” 1 in 2 agree 1 in 4 agree 1 in 3 agree

Seeking Help

8 in 10 agree that getting diagnosed early is good Help Seeking 1 in 7 would not seek help at all 1 in 4 would delay seeking help for as long as possible 1 in 3 who have had a partner/family member with dementia would delay for as long as possible

How would you feel if you were diagnosed? Scared or Anxious 4 out of 5 “I would be considered stupid” 1 in 3 “I wouldn’t want my friends & family to know” 1 in 3 “I would no longer be taken seriously” 1 in 2

Caring for someone living with Dementia

Caring for someone with dementia is… OFTEN VERY STRESSFUL 86% (96%) PHYSICALLY DEMANDING 86% (95%) VERY LONELY 75% (83%) CAN HAVE A NEGATIVE FINANCIAL IMPACT 65% (75%) IS WORSE THAN BEING PERSONALLY DIAGNOSED WITH DEMENTIA 32% (42%) ()= Partner/Family Member VERY REWARDING 67% (70%)

Summary

Poor knowledge of the basics People do not realise that they can change their risk dementia and there is a lack of awareness of the risk factors which contribute to dementia There is a desire to be inclusive of people living with dementia BUT stereotypes still dominate AND most people believe that society excludes those living with dementia Key Findings Fear of labelling & discrimination at diagnosis Delay in seeking help Loneliness, Isolation for Carers