From National Dementia Plan to Local Reality

Maija Juva, CoordinatorNorwegian Alzheimer Association

e-mail: ma.ju@nasjonalforeningen.no

An ageing population

0

200000

400000

600000

800000

1000000

1200000

2006 2010 2020 2030 2040 2050

90 år og eldre

80-89 år

70-79 år

Occurrence of Dementia in Norway

0

20000

40000

60000

80000

100000

120000

140000

160000

180000

2006 2010 2020 2030 2040 2050

90 +

85-89 år

80-84 år

75-79 år

70-74 år

65-69 år

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 organisationshow 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-mailcommunication, and on occasion, throughmeetings.

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

DEMENTIA

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 2009Lobbying 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