Although the objectives of this study, utilisation and quality, are highly relevant for the further development of respite offers and community services, a systematic search of three databanks - Medline®, PsychINFO®, and Cinahl® - shows that there has been little scientific research in these areas to date. Our study is the first which is concerned with support groups specifically for dementia caregivers and at the same time investigates the predictors for utilisation and indicators of the quality of support groups.
The sample of family caregivers was taken in four regions throughout Germany, which were suitable from the point of view of urban and rural with varying coverage of support groups. It was not, however, a representative sampling. By using various recruiting pathways, the medical services of Health Insurance companies, regional offices of the Alzheimer's Society and other caregiver counselling centres, it was possible to reach family caregivers with varying experience of support groups.
The response rate was more than 20%. This value corresponds exactly with the empirically-established response in anonymously written surveys of family caregivers who received no reward for answering [18
]. However, a recruitment bias cannot be excluded. The frequencies of the individual quality criteria should therefore be seen as orientation values. But by using various recruiting pathways, it was possible to affirm that a substantial fraction of family caregivers had never used support groups previously, as was to be expected in a representative sample. The fact that over 50% were non-users has also been seen in other studies about various respite offers [10
It can be confirmed that support groups are comparatively well known (awareness level 70%). The level of awareness is similar to the 59% seen in a study by Toseland et al. [12
], hence the first pre-requirement for utilisation is fulfilled. Brodaty et al. [20
] however report that the utilisation of respite offers by family caregivers is low, even though these are well known and even when the services are free of charge [21
]. This means that there must be other, more significant variables that determine utilisation. In our study, the family caregivers' assessment of need of support groups ("I need them") is a highly significant predictor for using them.
In a study by Toseland et al. [22
], it was demonstrated that the assessment of need is not a significant predictor for utilisation in the range of professional health and human services. However, it must be taken into consideration that this study is not specific to any one offer. Utilisation which depends on how well known the offer is, is significantly moderated by the assessment of need when the utilisation refers to a single service, as in our study. Here 30% said that they needed support groups urgently or very urgently. This percentage is three times as high as in Toseland et al. [12
] (9.0%) and about twice as high as in a study by Colantonio et al. [23
But the results of studies by Monahan et al. [24
] and Burks et al. [25
] concur with those presented here by regression analysis. In both studies, the assessment of the helpfulness of care groups - "I need them" - was shown as a significant predictor for the utilisation of support groups by family caregivers of dementia patients. So it can be reasoned that if there are plans to relieve as many family caregivers as possible, the service should not only be made known to family caregivers but the individual advantages of utilising support groups for himself/herself should also be pointed out. The results of our sensitivity analysis also suggest that it is of great importance to give information about how a support group can be accessed. This information should be given in a very practical manner, including a time-table of public transportation and a road-map.
Contrary to our study, Monahan et al. [24
] showed that the probability of the family caregiver's using a support group increases as the dementia patients become older and if there is help from other persons. But in conformity with our study, neither the age and gender of the family caregivers and patients, nor the duration of illness were significant predictors for utilisation [25
All in all, only 5.8% of respondents reckoned that support groups were not readily accessible to them. This result is comparable to published results (13.3%) [12
], where relatively low rates of poor accessibility to support groups are reported. Lack of knowledge about the nearest support group is, however, more frequent - 45% in our study and 41% in Toseland et al. [12
]. It must be taken into consideration that in other studies, easy access to respite offers is positively associated with utilisation [21
] and that in our study and in Toseland et al. [12
], about half of respondents knew nothing about the accessibility of their nearest support group. Therefore, another practical objective should be to give clear instructions about the location of the nearest support group and how to get there.
Although multi-component trainings are superior in their effectiveness, and therefore are often investigated [see for example [27
]], positive effects on caregivers' abilities and knowledge, burden and well-being through support groups could be shown in reviews [9
] and in meta-analytical studies [8
]. Despite this, little is known about the specifics of effective intervention. An empirical study about quality criteria for support groups could not be found in Medline®
. Just one single study that documented the experience of 18 dementia family caregivers in group counselling sessions refers to the importance of the aspects "to talk about anything" and "to be understood by the others" using semi-structured interviews [29
In our study with 404 responding family caregivers of a dementia patient, there is a pattern of agreement on the most frequent quality requirements, independent of whether the family caregivers already had attended support groups or not. Support groups should therefore aim for an intensive exchange of experiences which is characterised by the frankness of the members. Information and tips about dementia, treatments and dealing with dementia patients are often required.
This study introduces the family caregivers' views into the scientific discussion about quality standards for support groups for dementia caregivers, so that the extent of "unmet needs" [30
] can be reduced. This is important because consideration of the family caregivers' quality requirements reduces the barrier to utilisation [31