Dementia Guidelines and informal carers

Why was this example implemented?

The Guidelines regarding dementia were developed by NBHW on instructions from the Swedish Government. In Sweden the responsibility for formal care with regard to health care and social services is divided between national, regional/county, and municipal level. The Swedish Health and Medical Services Act and the Social Services Act are the regulatory frameworks for this area. The Health and Medical Services Act sets out the respective responsibilities of county councils (e.g. acute care, GPs and rehabilitation). The Social Service Act sets out the responsibilities of municipalities (e.g. social care home help in regular housing, home care, special housing, nursing homes, and day activities). These Guidelines were among others developed to overcome shortcomings due to the division of responsibilities (within the regulatory frameworks) for patients with dementia, who often need help from both health and social care. Furthermore the Guidelines also focused specifically on informal carers to consider the needs of informal carers. Other circumstances for the development are that the numbers of people with dementia will increase, peaking in year 2020, and also to control the cost. The Guidelines contribute towards efficient use of resources.

Description

The Guidelines cover 10 areas including prevention, living arrangements, medication and informal carers. The evidence given for the recommendations is scaled. Within these areas there are descriptions of 157 items providing explanations of how to deal with specific topics on dementia, according to a defined scheme:

• Nature of circumstances and intervention,
• Difficulties within the circumstances,
• Effects of interventions,
• Evidence of the effects,
• Health economic evaluation,
• Health economic evidence, and
• A recommendation.

These recommendations are prioritised from 1 to 10, with 1 as the highest priority. There is also information regarding the scientific evidence of the recommendations. All items have been developed and evaluated by expert groups during national and regional conferences. The focus of the Guidelines is on interventions about people suffering from dementia, but 7 of the 157 items are explicitly addressing interventions to informal carers. The following example is from the actual Guidelines on one of the 7 items addressed on informal carers ‘psychosocial support programmes for informal carers':

•  Nature of circumstances and intervention: Psychosocial support programmes for informal carers to patients with dementia
• Difficulties within the circumstances: Increased risk of psychological and physical problems and decreased quality of life
• Effects of interventions: Decreased worries and depression
• Evidence of effect: Strength of scientific evidence = 2 (on a scale from 1 to 4 where 1 represents best strength of evidence)
• Health economic evaluation: Cost efficient compared with no educational programme at all 
• Health economic evidence: Estimated (estimation of that there is an effect, but there is not enough scientific evidence) 
• Recommendation: Level 2 recommendations are prioritised from 1 to 10, with 1 as the highest priority. 

Furthermore the Guidelines explicitly address the needs of different organisations to cooperate regarding older people with dementia.

What are/were the effects?

NBHW rolled out the first national Guidelines on dementia in 2010 after several years of work, together with researchers and representatives of health and social care services. Though it is too early to show the effects of the Guidelines in daily care, the fact that they are really tangible and related to the individual patients suggests that the Guidelines will have a great impact in the future. The work with the Guidelines also includes 14 quality indicators developed by NBHW to be used to follow up dementia care. Two examples of the indicators are ‘The amount of people diagnosed with dementia that receive and are followed up by health care/social care.’ The NBHW estimated the consequences of the Guidelines in a national, regional and local perspective, mainly from the (economic and organisational) perspective of county councils and municipalities. In general it is complicated to calculate the costs of these interventions, in relation to the value for older people with dementia and their informal carers. The costs of the interventions and recommendations may occur in different stages, some occur immediately, others several years later. An intervention may initially increase costs, but decrease expenditures later on. The NBHW estimates concerning interventions for informal carers, showed that costs for county councils remained unchanged in the short term, but will decrease in the long run. For the municipalities estimations showed that costs will increase in short term, but decrease in a long term perspective. Finally, the NBHW could not estimate if interventions would have positive effects for the patients, while positive effects on informal carers were predicted. Several programmes to improve the conditions for informal carers have been initiated by the government over the last decade. The explicit inclusion of positive evidence for informal care support measures in the Guidelines has helped to focus local service development.

What are the strengths and limitations?

Strengths

• The development of the Guidelines has been lead by NBHW. The Guidelines have been thoroughly developed and rolled out at national conferences, also many of the items are very specific and clear. They are also prioritised.

Weaknesses

• The National Guidelines are guidelines; they are not legislation. But on the other hand the Guidelines have been developed by the NBHW and are therefore considered very important. 
• Regarding the health economic evidence and evaluation, the majority of the 157 items in the Guidelines have not been amenable to calculation nor estimation.

Opportunities

• The Guidelines are recommendations and parliament have decided to set aside funds to support the implementation. The implementation is carried out in different ways within Sweden. A common way of implementation is in the form of projects. Municipalities can apply for funds to start these projects and there are criteria for getting the project accepted. One criterion is that the project should be in coherence with the Guidelines, another is that municipalities and county councils cooperate within the project. The amount of money set aside for the projects is €3.2 million for 2010.

Threats

• Due to the fact that the cost of the interventions varies in the short and long term it is hard to calculate costs.

Credits

External Links and References

• Socialstyrelsen  
• National guidelines for health care services for dementia 
• Search guidelines for health care services for dementia