Respite care platform: Organising a diversity of respite services in the community

Warum wurde diese Initiative implementiert?

It is well evidenced that carers of older people with Alzheimer’s Disease experience a heavy care burden which has detrimental consequences on their physical, psychological and mental health status and is an important factor in their quality of life and potential risk of social isolation [1, 2, 3]. The rationale to construct respite care platforms emanated from evidence that, even when they existed, respite services such as day care or short-term care were not delivering the expected benefits due to numerous factors linked either to information deficits, to inappropriate targeting or to a negative judgement of the respite services’ quality [4, 5, 6]. Among the first priorities of the latest French Alzheimer plan (2009-2012) one programme aimed to set up a number of respite care platforms (RCPT) that should be well publicised and highly accessible while, at the same time, coordinating a variety of existing and newly designed respite care services. These should reconcile the needs and expectations of both carers and recipients of care. Following a research tender [7] on behalf of CNSA (National Agency for older people and people with disabilities) and the social division of the Minstry of Health and Social Affairs (DGCS), a national pilot was designed. Eleven experimental sites were chosen according to criteria that were mutually agreed by all stakeholders of the steering committee to insure a diversity of situations. The principle was to build upon providers which were already managing respite care services such as day care centres (for at least eight users) or carer support groups, as they were considered to be best suited for developing innovative and coordinated respite care services. The aims addressed the gaps identified between existing formal services and informal carers’ actual needs. These included improvements in the following areas [8]:

• to allow carers more free time;
• to provide better information and support, including a permanent monitoring process;
• to enhance carers’ social life and relationships with the cared for person;
• to contribute to the improvement of older people’s functional, cognitive and sensory capabilities. 

Beschreibung

The respite care platforms’ (RCPT) organisational framework consists of three coordinated functional sets:

• First, a RCPT is a setting where carers can find information and will be supported by various means to allow for more social integration. In order to do so, the individual carer’s needs and wishes have to be assessed in order to set up a support plan for the carer.
• Secondly, the role of the RCPT is to channel carers to specific services and to insure their use according to carers’ and care recipients’ requirements. To fulfil these goals the platform manager needs to achieve good communication with all locally existing providers of services for Alzheimer patients. This consists of being acknowledged as an important stakeholder within the care chain and to develop close links with, for instance, a memory clinic, the assessement team working on behalf of the General council managing the attendance allowance (APA), and with at least one of the existing centres for information and coordination (CLIC, MDPH). Also, partnership with Alzheimer’s support and/or advocacy groups is expected. While some RCPT may act only as referral agencies of users to appropriate services others may set up and perform those services that are lacking in-house skills. To achieve a high degree of accessibility to respite care, the platform also needs to be closely linked to social services.
• The third role of the RCPT is to develop better links with all service providers in its defined area by coordinating their activities and promoting new services that have been identified with all stakeholders as being needed. The RCPT is thus conceived to act as the main coordinator between the different providers of the network.

Each experimental setting was endowed with funds for a period of 18 months with a first assessment being scheduled after 9 months.

Welche Effekte wurden erzielt?

The quantitative assessment used specific data collected by each RCPT [9]. At least three visits were performed on each site with observations and interviews for qualitative judgement. The report covers the first 6 to 8 months of RCPT’s activities.

The analysis was based on the following dimensions:

• staff, population and area covered
• functioning: number of users (carers and older people suffering from Alzheimer’s); number, type and volume of services used
• Patient satisfaction and follow-up
• Operating costs
• Dynamics of the RCPT team: staff’s degree of knowledge concerning key providers in the area; number and intensity of partnerships; new services developed and the degree of achievement of coordination.

Results

Staff employment levels range from 0.9 to 3 full time equivalents (FTE) which is partly due to the wide range in the volume of the target population (between 12,752 and 82,827) and the corresponding variation in the surface of the covered area. The RCPT’s area of coverage was defined on pragmatic grounds in relation to the existing relationship with specific providers, rather than by adapting a needs-driven and thus population-based approach. This resulted (in terms of organisation) in the existence of two types of access: some RCPT set up a unique point of service (for densely populated and narrow area with staff located in an existing provider organisation); other RCPT decided to have different entry points that corresponded with the location of contracted service providers linked to the platform. In some cases, a decentralised office of the main entry point was opened.

The number of users, always expressed in terms of couples consisting of the main carer and the older person with Alzheimer’s, ranged between 50 and 210 couples. Among many other determinants, one reason for this difference was that some RCPT chose to include carers of Alzheimer’s patients at all stages of the disease (even the most advanced) while others chose to focus on users with moderate impairments only, i.e. those who needed some help with IADL or some ADL in their homes. Patients with mild stages of the disease were usually not targeted.

Regarding partnerships, a first level of assessment consists of contracted providers that are usually integrated in the RCPT steering committee. Rather than their absolute number which depends on the area’s size, it is the proportion of partners with respect to all potential stakeholders of the catchment area that serves as an indicator to assess the degree of leadership performed by an RCPT. Respective results ranged between 30 and 100%. A second level of assessment consists of political and other bodies that support the RCPT, e.g. providers that agreed to be quoted in the RCPT information leaflets as delivering services, and agreed to collect data for the assessment.

Of particular interest is the capacity of the RCPT to develop strong links with other organisations providing information for carers and people in need of care who may consider the RCPT as a competitor and exert opposition. The same is true for other coordinating bodies acknowledging that ‘by design’ RCPT were not allowed to develop partnerships with MAIA, a situation which may evolve in the near future.

Overall, 19 of a potential 23 respite care services were provided by the eleven platforms with each of them delivering between 4 to 10 services (beside the two mandatory ones).

While 20% of carers did not respond, 79% of repondents expressed that they were completly or rather satisfied. Having free time to see friends appeared less important than meeting with ‘peers’ or being able to fulfill other tasks and responsibilities; but also having their voice heard and being supported by an easily accessible and competent professional.

These results were used to develop a general model based on the results of a survey of operating costs in three RCPTs. The ‘model RCPT’ was supposed to be built on an existing provider with a 2.5 FTE staff for managing the provision of up to 200 couples of the 5 most wanted services (day care; support group; individual coping; peers groups; night support at home by volunteers). It showed that RCPT operating costs including provision of services would amount to €660,000 per year, however, including an out-of-pocket contribution of 40%.

Based on an estimatation for the French 75+ population, from about 400,000 Alzheimer’s patients with clear cognitive impairments, the number of potential main carers would range between 100,000 and 120,000. If 50% would potentially benefit from this programme and if access was limited to carers of people in the most advanced stages of the disease, the expected population to be covered would range between 30,000 and 40,000. As a result, for each general council, one to two RCPT would be needed for 200 couples.

Worin bestehen die Stärken und Schwächen der Initiative?

Strengths

• All RCPT succeeded in delivering a major part of the goals, particularly in delivering the mix of information/support/follow-up functions by developing a positive dynamic with main stakeholders which often resulted in the development of a set of new services.
• User satisfaction was high although some of the expected benefits were not achieved.

Limitations

• Presently no RCPT is able to respond to all types of carers’ needs, as some are caring for older persons at different stages of Alzheimer’s disease.
• No RCPT has developed a real strategy to tackle this issue as their approach was not ‘demand- based’.
• Now that RCPT are better known and appreciated, they have pointed to the growing expectation that their present budget will probably be insufficient.
• Issues regarding the type of access (unique or multiple access-points) are still to be determined as well as the amount of platforms necessary to roll-out the model in the whole of France. 

Impressum

Links zu anderen INTERLINKS-Initiativen

Externe Links und Literatur

1 Marvardi M, Mattioli P, Spazzafumo L et al (2005). ‘The Caregiver Burden Inventory in evaluating the burden of caregivers of elderly demented patients: results from a multicenter study’ in: Aging clinical and experimental research, Vol 17 (1): 46-53.

2 Cooper C, Balamurali TB, Livingston G (2007). ‘A systematic review of the prevalence and covariates of anxiety in caregivers of people with dementia’ in: International Psychogeriatrics, Vol 19 (2): 175-195.

3  Gaugler JE, Kane RL, Kane RA & R Newcomer (2005). ‘Early community-based service utilization and its effects on institutionalization in dementia caregiving’ in: Gerontologist, Vol 45 (2): 177-185.

4 Måvall L, Thorslund M (2007). ‘Does day care also provide care for the caregiver?’ in: Archives of Gerontology and Geriatrics, Vol 45 (2): 137–150.

5 Villars, H, Gardette V, Sourdet S & S Andrieu (2010). Evaluation des structures de répit pour le patient atteint de maladie d’Alzheimer (et syndrome apparentés) et son aidant principal: Revue de la littérature.

6 Gerontoclef (2010). Analyse des effets de l’hébergement temporaire sur le devenir des personnes âgées en perte d’autonomie en lien avec la charge de leurs aidants informels. Rapport de recherche.

7 Appel d’offre CNSA pour l’expérimentation de plate formes de répit pour les aidants familiaux (http://www.plan-alzheimer.gouv.fr/structures-de-repit-lancement-de-l.html).

8 ANESM (2011). L’accompagnement pluridisciplinaire au bénéfice de l’aide, de l’aidant et du lien aidant/aidé dans les structures de répit et d’accompagnement. Cadre théorique et pratiques professionnelles constatées. Rapport de recherche.

9 Gerontoclef (2011). Evaluation d’un dispositif de plateformes de répit pour les aidants familiaux de personnes atteintes de maladies d’Alzheimer et apparentées. Rapport de recherche.

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