From National Dementia Plan to Local Reality Maija

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

An ageing population

Occurrence of Dementia in Norway

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.

Dementia Plan 2015 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

Focus areas in the Dementia Plan – 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

Day programmes • 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

Adapted living facilities • 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

Family caregivers • 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

More knowledge and greater competence • 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

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.

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?

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 DE NT ME IA

In practice • 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.

• 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

Lobbying gets results • 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

Parliamentary election 2009 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