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Psychosocial interventions

European Collaboration on Dementia

Introduction

While pharmacological treatments undergo strict double-blind placebo-controlled studies, the same is very often not the case for the various non-pharmacological or psychosocial interventions used with people with dementia and their carers. Therefore, the aim of this project is to identify the evidence and consensus based recommendations for psychosocial interventions in dementia care in order to develop a set of potential quality indicators. This reliable set of quality indicators could be used as an instrument to improve the quality of psychosocial care in dementia in Europe.

Development of the quality indicators

A quality indicator is “a measurable element of practice performance, for which there is evidence available or consensus that it is capable of assessing improvement in the quality, and hence change in the quality of care provided” (Lawrence and Olesen, 1997). A quality indicator measures the quality of the performance of professional practice (Grol et al, 2005).

The aspects of practice can be expressed most simply as a numerator (describing actual performance in target group) and a denominator (describing target group in absolute numbers).

In this way, the quality of care can be described explicitly as a percentage between 0 and 100 (Grol et al, 2005).

Example:

Number of people with dementia that are assessed for depression (numerator)

x 100%

Total number of people with dementia (denominator)

Quality indicators can refer to structures, processes or outcomes of provided care. Structural indicators focus on organizational aspects of service provision, process indicators focus on the actual care delivered to and negotiated with patients, outcome indicators focus on the ultimate goal of the care given (Grol et al, 2005).

Examples of the different types of quality indicators:

  • Structure: Percentage of dementia care services that are using a validated instrument to assess depression in people with dementia.
  • Process: Percentage of people with dementia that are assessed for depression at dementia care service.
  • Outcome: Percentage of people with dementia diagnosed with depression who receive treatment

Methods

The work group members agreed that the potential set of quality indicators should be applicable to the range of psychosocial problems and interventions. This general level is new and there is no format which can be followed. There is a need for such a general focus since systematic reviews indicated that no specific intervention is superior.

Rather than developing quality indicators for a specific category of professionals, the set is meant for use by all stakeholders. It should be potentially helpful for a specific patient. It can be used by professional and non-professional carers.

Considering this as a starting point the quality indicators should cover:

  1. patients and carers´ needs
  2. potential interventions
  3. how to identify needs for care and to make action plans acceptable for all those involved

Considering the scope and available time for this project the best method to develop a set of potential quality indicators is a method which is objective, not time consuming and uses available knowledge. The quality indicators are therefore derived from evidence-based guidelines by an iterated consensus rating procedure. This procedure combines evidence with expert opinion (Campbell et al, 2002, 2003, Grol et al, 2005).

It starts with selecting core recommendations from evidence-based guidelines. Then, an expert panel is used to reach consensus about the most useful recommendations. Finally, the set of potential quality indicators is constructed based on the key recommendations.

The building blocks of the quality indicators are:

1) a review of reviews on the effects of psychosocial interventions

2) an inventory on recommendations for psychosocial interventions included in dementia guidelines across Europe

3) consensus on key recommendations by European dementia experts.

Bulding blocks of quality indicators

Review of reviews

To gather available evidence on the effect and effectiveness of psychosocial interventions a literature search was carried out to identify reviews on the subject.

Search strategy

We searched for reviews in Pubmed and the Cochrane library using the following terms:

Dementia (MESH) AND psychosocial OR non-pharmacological OR intervention; limits: review.

Reviews found using this strategy were used as a source for new references of reviews on the subject. The articles found were presented at the work group members and they agreed to only select systematic reviews and reviews that were available in the Cochrane library and not written before 1999. Also, they were asked to add any missing reviews they knew of, meeting the selection criteria.

Results

The strategy described above resulted in the selection of 17 reviews (appendix 1). Because some work group members were at that moment involved in writing a systematic review that would meet the search criteria, preliminary results were included. Also, there seemed to be a lack of reviews focussing specifically on the use of psychosocial interventions in institutional care. Therefore, a review of the literature on this subject, especially aiming at the communication between patients and nursing staff was carried out.

Inventory guidelines on psychosocial interventions across Europe

Search for guidelines

To start the inventory the Interdem network was used to gather information on available guidelines on psychosocial interventions in dementia across Europe. Contacts in the following countries were sent an email with a request to gather guidelines on the subject: the UK, Spain, the Netherlands, Belgium, France, Germany, Ireland, Italy, Portugal, Switzerland, Greece, Poland, Sweden, Austria, Denmark and Finland.

No information was received from contacts in Greece, Poland and Austria.. The information received from the other contacts was put together in a table (appendix 2) and is discussed hereafter.

Results

Countries for which no documents/guidelines were available

In Finland , there are guidelines on the diagnosis and pharmacotherapy of Alzheimer’s disease that were published in May 2006 but no documents on psychosocial approaches are available.

In Belgium , no national guidelines are available but documents/guidelines on the subject from Germany and the Netherlands are used in dementia care.

In Denmark , the Ministry of Social Affairs published a literature review of the documented effects of caring-methods for people with dementia. The conclusion was that the various psychosocial interventions do appear to have a positive effect on people with dementia and on the different problems that often occur along with the disease. But there is no solid documentation on the effect of the methods.

In Sweden , two expert groups were working on the development of guidelines which should have been published in Autumn 2008. Recommendations are done, including psychosocial interventions.

Countries with papers/reports on psychosocial interventions available

In France, two consensus papers exist; one was published in 2008 by HAS which underlined that only reality orientation had some robust evidence of effectiveness and that in general the evidence level of psychosocial interventions is very low. Another national report concerning psychosocial interventions was published in 2005 (OPEPS) for the Ministry of Health. Conclusions were similar to the HAS report.

In Switzerland , a consensus paper on diagnostics and therapy of Alzheimer’s disease was published (2003) by the “Forum Alzheimer Suisse”. The only important information on psychosocial interventions was the recommendation to first use non-pharmacological interventions in the “treatment” of behavioural symptoms and only, if unsuccessful, to try pharmacological strategies.

In Ireland , an “Action plan for dementia” (1999) exists, developed by the National Council on Ageing and Older People. The plan is a reflection of the views of health care professionals and policymakers working in the area of dementia and should serve as a model of best practice for the provision and planning of services to meet the individual needs of people with dementia and their carers. Some attention is given to psychosocial interventions but no specific recommendations about their use are done.

Guidelines on psychosocial interventions available

In Italy , different types of guidelines/documents on dementia are available: guidelines governing relationships between the Italian Alzheimer's Societies and pharmaceutical companies, general guidelines coordinated by medical doctors, and guidelines for the treatment of Alzheimer’s disease (2005). The last one is an evidence-based review article by a committee of experts from the Italian Association of Psychogeriatrics in which several psychosocial interventions are discussed.

In Germany, the most important and recent (May 2006) guideline on psychosocial interventions was developed by the Kuratorium Deutsche Altershilfe and the Institut für Pflegewissenschaft der Universität Witten/Herdecke for the German Ministry of Health. These guidelines only focus on institutional care. The German society for psychiatry, psychotherapy and neurology developed guidelines for the treatment of dementia. Besides pharmacological treatment, it also recommends the use of different psychosocial interventions for different stages of dementia. Other German guidelines/documents on dementia treatment which give attention to psychosocial approaches focus on day care facilities, the use of restraints, and general practitioners.

In the Netherlands, guidelines on dementia treatment and/or care are available for medical doctors, and nursing staff. The guidelines for geriatricians mainly focus on diagnosis and pharmacological treatment and only lists psychosocial interventions in the appendix. The guideline developed for general practitioners pays more attention to the psychosocial environment of dementia patients but recommendations are carefully described. For nursing staff there is a handbook on the use of Snoezelen in institutional care, developed by the Netherlands Institute for Health Services Research. This institute also developed a guideline for the support of apathetic or depressed dementia patients, which is entirely focused on a psychosocial approach by nursing staff. The Dutch society for Nursing Home Physicians developed guidelines for the management of problem behaviours in nursing home patients. It mentions pharmacological as well as psychosocial approaches for treating and monitoring problem behaviours in nursing home patients.

Furthermore, a consensus paper on the cooperation between general practitioners and professional caregivers was developed for diagnostics and support for dementia patients and their informal caregivers. It stresses the importance of emotion-oriented care.

In the United Kingdom , the two most important national clinical guidelines on dementia are developed by SIGN (2006) (for Scotland) and for England & Wales, the guidelines produced jointly by NICE & SCIE (2006), covering both health and social care. Both guidelines contain chapters on psychosocial interventions and give recommendations based on systematic literature searches. Several other guidelines/documents which mention the importance of the psychosocial environment and/or use of psychosocial interventions besides pharmacological treatment are available for general practitioners, social care workers and the local government.

In Spain , several guidelines are also available. The guidelines of the Spanish Society of Familiar and Communitary Medicine (1999), the Spanish Multidisciplinary Group for the Coordinated Attention of a Patient with Dementia (2002), and the Working Group for Alzheimer’s Disease and Other Dementias of Late Life (2001) provide recommendations on the use of psychosocial interventions in dementia care and treatment. Other guidelines/documents mention some psychosocial aspects of dementia treatment and/or care but do not give recommendations on use of specific psychosocial interventions.

Quality of the guidelines

To assess the quality of the guidelines, the work group used the AGREE-instrument (AGREE collaboration) to rate them. The guidelines that were most recently developed and which paid broad attention to psychosocial interventions were chosen for this procedure. Ratings were solely based on the sections about psychosocial interventions. Other sections in the guidelines were not considered during the rating procedure, except for the more general parts about the development of the guideline. The scores do not therefore reflect the quality of any of the guidelines as a whole.

Results

A total of 9 guidelines from 5 countries were rated with the AGREE-instrument. The Italian guideline and SIGN guideline were rated by all work group members during a meeting in Brussels. The other 7 guidelines were rated by at least two people. In some cases two work group members (NICE, Rahmenempfehlungen) in the other cases by one work group member and a dementia expert known by a work group member, who was able to rate the guideline in its original language (Spanish or Dutch).

Results were calculated according to the instructions given in the AGREE-document and scores by domain are presented in table 1. Higher percentages reflect better quality.

Table 1. Appraisal of chapters about psychosocial interventions in European dementia guidelines. AGREE domain scores.

 

Domain score (%)

Guideline

Scope and purposes

Stakeholder involvement

Rigour of development

Clarity and presentation

Applicability

Editorial independence

SIGN

65

32

79

56

46

72

Italian guidelines

57

36

45

42

6

33

NICE

89

88

90

88

89

100

Rahmenempfehlungen

89

71

79

67

28

58

Spanish multidisc. group

78

46

38

71

17

8

CBO

78

46

40

13

0

58

NIVEL

83

83

52

63

22

50

LESA

44

46

19

46

28

42

NHG

39

50

43

67

17

42

It can be concluded that quality varies not only between guidelines but also within guidelines. The NICE guidelines have the highest scores for all domains and therefore have the best overall quality of all guidelines that were rated.

Consensus on key recommendations by European dementia experts

Procedure step by step

Agreement on composition and selection of expert panels in each country

The work group decided out of convenience to have only expert panels in countries where an Interdem member could be contacted. Also, at the Alzheimer Europe conference in Estoril (Portugal, 2007) people involved in dementia care were invited to take part in the consensus procedure. It was agreed by the work group members that it was important to approach at least the opinion leaders in each country involved. An expert in dementia care was defined as someone who is involved in dementia care, like researchers, carers or, clinicians.

To guarantee the objectivity of the procedure and avoid time consuming face-to-face panel discussions in different countries led by different people, the experts rated the recommendations by means of a questionnaire.

Selection of core recommendations by the work group

All evidence-based recommendations on psychosocial interventions found in the European guidelines on dementia through the inventory of guidelines were gathered. These recommendations were then discussed by the work group members during a face-to-face meeting. A recommendation was included for the postal rounds when it was agreed by work group members that it was important for psychosocial care in dementia. It was ensured that selected recommendations did not overlap with the area of other Eurocode work packages.

First postal round

During the first round of questionnaires experts were asked to rate each recommendation twice, based on the questions (appendix 3):

1) Would applying this recommendation to dementia care contribute to the improvement of its quality?

2) How much priority should this recommendation be given in dementia care in your country?

Experts were also asked to list their personal top 5 recommendations for each category, starting with the recommendation they found most useful for improving the quality of dementia care. Experts were also permitted to add or adjust the recommendations presented.

Second postal round

All recommendations included in the first round were also included in the second postal round. Recommendations that were adjusted or added by the experts during the first round were also included in the second questionnaire.

Experts were then asked to rate all recommendations based on the question (appendix 4):

  • Considering the way in which dementia care will be organised in your country in the next 5 years, how feasible is implementation of this recommendation within 5 years in (parts of) your country?

The added and adjusted recommendations were also rated for their contribution to improve the quality of care.

Results

Selection of core recommendations by work group

Of all available evidence based recommendations in European guidelines on dementia a total of 104 were selected by the work group members for their relevance to psychosocial care in dementia. These recommendations were then divided into 8 categories and a questionnaire was constructed for the first postal round.

The recommendations were derived from the following guidelines:

  • Dementia: Supporting People with Dementia and their Carers - NICE-SCIE (UK)
  • Management of patients with dementia: A national clinical guideline - SIGN (UK)
  • Rahmenempfehlungen zum Umgang mit herausforderndem Verhalten bei Menschen mit Demenz in der stationären Altenhilfe - Kuratorium Deutsche Altershilfe + das Institut für Pflegewissenschaft der Universität Witten/Herdecke (Germany)
  • Diagnostiek en medicamenteuze behandeling van dementie (diagnosis and pharmacological treatment in dementia- CBO (Netherlands)
  • Richtlijnen voor verzorgenden (depressie en apathie) (Guidelines for health aides) - NIVEL (Netherlands)
  • NHG standaard dementie (Dutch college general practitioners)

Expert panel and postal rounds

About 80 questionnaires were handed out to dementia experts attending the Alzheimer Europe Conference in Estoril in May 2007. They were asked to fill in the questionnaire and sent it back to the work group in the envelope provided. Furthermore, an email request was sent to Alzheimer centre coordinators in as many European countries as possible in September 2007. They were also asked to fill in the questionnaire and sent it back to the work group by email or regular mail. By these means nineteen questionnaires were filled-in and received back by the work group.

Additionally, about 60 questionnaires were sent by regular mail to Interdem contacts in different European countries. The contacts were asked to fill in a questionnaire and/or hand it out to colleagues. Thirty of these questionnaires were filled-in and sent back.

A total of 49 questionnaires were sent back from May 2007 until December 2007. These were filled in by dementia experts from 13 different European countries: Belgium (4), Denmark (1), Finland (6), France (5), Germany (2), Greece (1), Italy (8), the Netherlands (9), Poland (2), Slovakia (1), Spain (4), Turkey (1), and the UK (5).

The work group decided to change the second postal round into an email round because of time considerations. The 49 experts that had filled in a questionnaire during the first round were therefore sent an email request in May 2008 to also fill in the second questionnaire, which was attached to the email. Unfortunately, not all of the 49 experts could be reached by email because email addresses were no longer in use.

Therefore, only 38 of the 49 experts were sent a request and 14 questionnaires were filled in and returned by email between May and July 2008. These 14 questionnaires came from experts from 9 different countries: Belgium (2), Denmark (1), Finland (2), France (2), Italy (1), the Netherlands (2), Poland (1), Turkey (1), and the UK (2).

Constructing the potential set of quality indicators

In order to construct a reliable set of potential quality indicators, it is important that the set of key recommendations they are based on score high on average for usefulness for improving quality of dementia care. Also, there should not be much variation in scores for a single recommendation because disagreements between experts can lead to problems when implementing the quality indicators into practice because of lack of consensus. (Grol et al, 2005, RAND/UCLA handbook).

The construction of the potential set of quality indicators was divided over two work group meetings. During the first meeting (May 2008) the results of the first questionnaire round were discussed. These results showed that average scores for usefulness as well as priority were high for all of the 104 recommendations (table 2). Medians ranged between 5-9 and therefore it could be concluded that experts agreed that almost all of the 104 recommendations are important for improving quality of dementia care. Because statistic results did not differentiate enough, the work group decided that the set of key recommendations would be based on the results of the top 5 listings of the 49 experts.

Table 2. Overall results of the first and second expert questionnaire rounds

 

Overall

Median frequency

(# recommendations with median)

 

N range

Mean

Median range

4

4,5

5

6

6,5

7

7,5

8

8,5

9

 

Useful

47-49

7,65 SD: 0,64

5-9

0

0

1

3

1

14

0

65

1

19

 

Priority

47-49

7,29 SD: 0,68

5-9

0

0

1

7

0

27

0

61

0

8

 

Implement

13-14

6,09 SD: 0,71

4-8

4

1

3

29

13

46

3

5

0

0

 

The overall ranking of recommendations in the top 5 listings was calculated as follows per category:

For each number-one ranking by an expert, a recommendation was awarded 5 points, for each number-two ranking, a recommendation was awarded 4 points and so on.

In this way, an overall top 5 per category was calculated. For categories with less than 10 recommendations (2 categories), only the top 3 recommendations were included. One category existed of only two recommendations which were ranked equally important by the experts and were therefore both included. Finally, a total of 33 recommendations ranked top 5 or top 3 overall in their category were discussed during the first work group meeting. Recommendations were joined together wherever possible, recommendations that overlapped with others were excluded and recommendations were rephrased if this was thought necessary. This resulted in a final set of 17 key recommendations (appendix 3).

During the second and final meeting (October 2008) the work group constructed the potential set of quality indicators based on the 17 key recommendations and results of the second questionnaire round. Expert ratings for feasibility of implementations indicated that not all of the 17 key recommendations were considered equally implementable (table 2). Key recommendations that scored a median of 6 or lower (5 recommendations) were not turned into a quality indicator unless the work group agreed that it covered a basic principle of psychosocial care in dementia and therefore was essential for improving its quality.

At the end of this meeting 15 quality indicators were constructed (appendix 4).

This potential set consisted of:

  • 11 quality indicators for people with dementia
  • 3 quality indicators for informal carers of people with dementia
  • 1 quality indicator for formal carers of people with dementia

All quality indicators are process indicators and therefore focus on the actual care delivered to and negotiated with people with dementia and their caregivers at any health care service providing dementia care.

Conclusion

The aim of this project was to identify the evidence and consensus based recommendations for psychosocial interventions in dementia care in order to develop a set of potential quality indicators.

During the course of this project the work group gathered evidence by conducting a review of reviews and an inventory of European guidelines on psychosocial interventions.

The main conclusions of the review of reviews are that interventions directed at both the person with dementia and the informal carer are the most effective ones. Especially when these interventions are multi-component, address personal needs for care, and help to reframe dysfunctional perceptions into more effective ones. The inventory on dementia guidelines across Europe revealed that attention for the use of psychosocial interventions in dementia is growing in several European countries. However, only in 5 countries recommendations for psychosocial interventions have been found in dementia guidelines.

All psychosocial recommendations found through the inventory of European guidelines were gathered and rated for usefulness in improving quality of dementia care. The opinion of 49 European dementia experts from 13 different European countries was used for a consensus set of key recommendations for psychosocial care in dementia. Finally, the work group constructed a set of 15 reliable, potential quality indicators based on these key recommendations. This set of quality indicators provides policy makers and health care professionals an useful instrument to implement evidence based recommendations and improve quality of psychosocial care for people with dementia and their carers in European countries.

All of the quality indicators developed here focus on the process of the care delivered to people with dementia and their caregivers. Ideally, quality of care is measured by the outcome of the care given. Unfortunately, there is no clear consensus on which outcome measures could be used best in psychosocial intervention research. The Interdem group therefore reached a European consensus on outcome measures to be used in psychosocial intervention research (Moniz-Cook et al, 2008). The recommended outcome measures should be used by researchers in order to improve the comparability of results of psychosocial intervention studies in Europe. In the end this will result in better scientific evidence for the effectiveness of psychosocial interventions and the improvement of the psychosocial care given to people with dementia and their caregivers.

 

 
 

Last Updated: jeudi 13 août 2009

 

 
 

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