Memory Barometer 2020

Kuvituskuva: Kaksi naista huput päässä kävelevät rannalla ja nauravat.

The Memory Barometer survey (Muistibarometri), conducted every five years by the Alzheimer Society of Finland, has been published for 2020. The survey was conducted as part of the National Memory Programme in collaboration with the National Institute for Health and Welfare and the Ministry of Social Affairs and Health. Funding for the project was granted by the Funding Centre for Social Welfare and Health Organisations (STEA).

The Memory Barometer survey measures the status of memory work, i.e. services for people with dementia (or, as we say in Finland, people with memory-related diseases), in municipalities nationwide and highlights areas for improvement. The response rate was 79% and the municipal coverage 82.7%. A total of 139 responses were received. The barometer was sent out at the end of May 2020 to the people responsible for the services for older people in municipalities and local government collaboration areas. The respondents were encouraged to answer the survey in working groups, with the idea that questions on different topics would be answered by people familiar with the services in question.  

Dementia in social and health policies 

Taking dementia into consideration in municipal services starts at the planning stage. In general, services for people with dementia, especially medical rehabilitation and service housing with 24-hour assistance, are taken into account better than before in plans to support the ageing population. Respondents estimated that approximately 84% of the regions had a coherent service path model in place.

Using the number of people with dementia as a starting point in planning has remained high. The National Memory Programme (2012–2020) was now used as a framework for planning more often than five years earlier.  

Support for the initial stage 

In some respects, support for the initial stage has remained at the level it was five years ago; especially the availability of initial information courses was perceived to be at a good level in less than half of the regions. Support for the initial stage is a very important step on the service path and ought to be at a good level nationwide. Receiving help for the initial confusion supports mental coping and improves the ability to function.

On a positive note, supporting the right of self-determination of people with dementia and offering proactive legal counselling in matters concerning, for instance, advance healthcare directives and guardianship authorizations have increased.

For guidance related to guardianship and advance directives, the Alzheimer Society of Finland has published guides and an advance healthcare directive document, so information is now more widely available than before. A lot of advocacy work has also been done.  

Services aimed at the working age population improving 

The services aimed at working age people were perceived to be worst implemented among the services for people with dementia in general. Individual needs were perceived to be best addressed, but even so, only 30% of the respondents thought these services were well implemented. Only one-fifth of the respondents considered the services for ensuring the well-being of underaged children to be well implemented.

The implementation of services related to the ability to continue to work was given the lowest rating. On the positive side, services for working age people are currently being advanced in half of the regions. 

There is already a memory clinic in 86% of the regions, and 97% of the regions already have at least one memory nurse or coordinator. The number of memory nurses and/or memory coordinators has increased in 43% of the regions and remained the same in 54% of the regions. 

More improvement needed in supporting living at home 

In general, municipalities are motivated to enable people to live at home for as long as possible. More attention should be paid to improving the quality and availability of caregiver-relief services, night care services, and daytime activities for people with dementia. Advancement of the quality and availability of these services is lagging behind when compared to improvements observed in other services.

Daytime activities support people with dementia, whether living alone or with family, as well as their family members. There has been a 10 percentage point drop in the availability of caregivers' rehabilitation services, which is a worrying trend that could affect their wellbeing. 

More advancement needed on the knowledge of drug-free treatment methods 

When municipalities procure 24-hour care from private service providers, questions concerning the service providers’ knowledge on drug-free treatment methods are relatively rare in, for example, invitations to tender. Just over one-third of the municipalities enquired about it, even though there is strong scientific evidence about the benefits of drug-free methods such as music in, for example, reducing behaviour perceived to be challenging.

Six out of ten respondents asked about the implementation of the criteria for good treatment or other quality control tools. Most invitations to tender (more than 70%) included questions about self-monitoring plans, staff training, the collection of feedback, or collaborative planning. 

Collecting and utilising feedback is one of the guarantees of quality, and it is also required by the Finnish Act on Supporting the Functional Capacity of the Older Population and on Social and Health Services for Older Persons. The majority of the municipalities said that they collect feedback on their services. The new forms of long-term care housing, i.e. foster home care and intermediate form of housing for older people, are lagging behind in collecting feedback – even though utilising feedback would be particularly useful in developing new forms of service.

In Finland, housing is on the responsibility of the Ministry of the Environment, which defines intermediate form of housing for older people as follows: it means housing solutions that are between service housing with 24-hour assistance and ordinary housing for people of all ages. From people with dementia themselves, feedback was most often collected in service housing with 24-hour assistance and in services supporting home care (over 70%).

Feedback was most often utilised to support management and co-development. However, it is much less common to publish the feedback, which would make decision-making easier for customers with service vouchers, for example. 

Associations valuable assets in influencing attitudes 

Collaboration with associations is quite common, in particular in counselling, informing, and guidance (85%). Collaboration related to initial information materials and events, improving preventative work, and collaborative planning was also common.

In addition, nearly two-thirds of the respondents said that collaboration occurred in the form of rehabilitative activities. This is understandable, since activities organized by associations offer opportunities to participate in meaningful activities, experience inclusion, and maintain social contacts.

Only 35% of the respondents mentioned attitude-influencing work, for example, Dementia Friend Information Sessions, as a form of collaboration. Associations could have a lot to offer as shapers of attitudes. 

Continuing our journey towards a memory-friendly Finland 

The aim of the memory programme was to build solidarity to create a memory-friendly Finland. Advancement has occurred on several fronts over the last five years. However, certain important issues, such as supporting living at home and services aimed at relatives and loved ones, are lagging behind compared to other areas.

Ensuring the availability of the necessary services comprehensively throughout Finland and supporting relatives and loved ones would be in line with the ideal of solidarity. Attitude-influencing work, the collection and utilisation of feedback, and the diversification of housing solutions for people with dementia are also among the issues that still require attention.