From National Dementia Plan to Local Reality

1. From National Dementia Plan to Local Reality Maija Juva, Coordinator Norwegian Alzheimer Association e-mail: ma.ju@nasjonalforeningen.no

2. An ageing population

3. Occurrence of Dementia in Norway

4. Vision for Dementia Plan 2015 High quality services to people with dementia will contribute to a generally higher quality of health and care services in society.

5. The government aims at improving services to people with dementia. It realizes that health care personnel and the general public do not have enough knowledge about dementia the quality of services is not good enough there are great geographical variations in the level of services Dementia Plan 2015

6. Day programmes and services providing respite fo family caregivers Living facilities better adapted to patient needs, ”small is beautiful” Information, guidance and support to family caregivers High level of expertise, early diagnosis Focus areas in the Dementia Plan

7. The missing link in the chain of services Only 6.5 % of people with dementia living at home are in day programmes adapted to their needs Provide a meaningful day and make it possible to postpone institutionalisation Provide respite to family caregivers Day programmes

8. 80 % of those with a permanent place in a nursing home have dementia, but only a small fraction of the places have been adapted for people with dementia ”Small is beautiful” – small living groups, stable staff and direct access to adapted outdoor areas Investment grants for nursing homes and assisted living facilities Adapted living facilities

9. Courses and support groups for family caregivers. A cooperation between the local authorities and dementia associations. Family caregivers are entitled to respite in their provision of care to family members according to the Act of Social Services Family caregivers

10. Information to health professionals, people with dementia, family carers, the general public Training for health professionals and family carers Higher degree of local medical competence on dementia Research More knowledge and greater competence

11. What do we do? We lobby! We teach our 130 local dementia organisations how to lobby through a programme called ”From powerlessness to power”. The programme starts with a weekend-course on legislation and lobbying techniques. The course is followed up by telephone and e-mail communication, and on occasion, through meetings.

12. Why? • The Norwegian Alzheimer Association has to be a watch dog and make sure that the plan will be realised! • Does the government keep its promises? • Do local authorities follow up the plan?

13. Lobbying locally • Bad decisions are not always based on ill will, most often they are based on ignorance • Lobbying brings people with dementia and the challenges they and their family carers face into focus • Lobbying brings Dementia Plan 2015 into focus DEMENTIA

14. We ask local authorities how they are planning to implement Dementia Plan 2015: Do they have knowledge of the plan and a strategy for implementing the plan? We inform them about the number of people we are talking about, their needs, the consequences of inadequate services, and the financial consequenses of failing to implement the plan. In practice

15. We challenge the local political and administrative leaders in municipal government A meeting with the head of health and social welfare services Contact with politicians Contact with media The aim is cooperation, not conflict

16. Dementia organisations are invited to comment on municipal plans There is formal cooperation with local authorities about arranging courses for family carers and meetings for the general public The activity in special care units continues when municipal finances are cut back There is greater openness in society about dementia; people with dementia talk about their illness, carers share their experiences and the media tell their stories Lobbying gets results

17. Lobbying strategy during the election campaign: Two focus areas: day programmes and nursing homes Postcards to all parliamentary candidates with a message about day programmes or nursing homes, sent by local dementia associations Letters to the editors in local newspapers with focus on local circumstances concerning day programmes or nursing homes On national level, focus on dementia by pointing out that care for the elderly = care for people with dementia Parliamentary election 2009