Impact study: Support and Respite Platforms

Set up as part of the 2008-2012 Alzheimer’s plan, support and respite platforms (PFR) are support solutions for caregivers in France. The PFR federation has just published a report and a list of recommendations for the needs of different support and respite platforms to help them in their support mission.

Originally created just for caregivers of people with Alzheimer’s diseaser, the LICs have open to all in 2021thus allowing establishments and medico-social services to carry a support platform for caregivers of people losing their autonomywithout distinction on the profile of the person being helped.

In 2024, 297 platforms are referenced by the Federation of PFR throughout France. The role of the federation (FPFR) is to represent them nationally.

The Federation Supporting PFR Carers recently published a impact study on support and respite platforms. This report highlights the challenges encountered since their creation, while highlighting the positive aspects observed and formulating recommendations for years to come.

Competition between systems: a challenge for support for caregivers

The 2022 IGAS report highlights a major limitation to the development of respite platforms (PFR): their insufficient articulation with departmental policies. Indeed, the latter have specific skills for those receiving assistance, in particular the elderly and people with disabilities, and some have set up systems dedicated to caregivers. This situation generates a sometimes redundant offer in the territory, where 58% of PFRs offer activities also provided by other local actors such as health establishments, CCAS, or even home services.

This proliferation of devices can lead to competition between playersmaking the offer confusing for caregivers. For example, in Vendée, a home hospitalization service (HAD) has created a “ caregiver resource“, incorporating services similar to those of PFRs, such as individual interviews and workshops. In Boulogne-Billancourt, an overabundance of cooking workshops offered by different partners questions the relevance and effectiveness of these initiatives, while raising questions about the optimization of public funding. This situation poses a key challenge : that of the regulation and coordination of systems to guarantee their complementarity and their quality, thus avoiding fragmentation which could harm the objective ofcomprehensive and effective support for caregivers.

Very appreciated support according to this impact report

This impact report notes that the support offered by LICs is generally very positive for caregivers and the structures welcoming them. We note:

• Significant improvements in daily life:

Carers supported by PFRs very clearly perceive the positive effects of the support they receive in their daily lives.

• A very useful resource and information contribution:

When caregivers come into contact with a PFR, they obtain useful information on existing supports and resources, both for themselves and for the person being cared for.

• A warm welcome from professionals:

The quality of the welcome offered by the PFR teams is widely recognized by all the carers supported, since 87% of them declare having been well received and 80% have the feeling of being listened to by LIC professionals.

• A space of mutual aid and trust:

In addition to the quality of the welcome and the relationship with the professionals of the platform team, caregivers also appreciate the exchanges with other caregivers who participate in PFR activities. 60% consider that these exchanges between caregivers bring them comfort.

The crucial role of PFR in helping caregivers

Support and respite platforms (PFR) play a crucial role in the support for caregiversparticularly the most vulnerable. These structures, although little known, respond to a growing need by offering a space for listening and exchange. Helpers can find recognition of their roleas well as information on solutions adapted to their daily challenges. PFRs strive to build relationships of trust, enabling caregivers toexpress their emotions and better understand their position. However, their participation in activities remains limited, often due to the numerous obstacles that caregivers encounter in their daily lives.

Despite the commitment of the teams, LICs face significant constraints. With limited human and financial resources, these structures struggle to fully meet the expectations of caregivers. Their legitimacy, although established, needs to be strengthened to integrate more coherently into the medico-social landscape and to articulate the various local initiatives. To maximize their impactit is essential to develop their resources, consolidate partnerships and improve their visibility. These actions would make it possible to build a real support journey for caregiverswhile optimizing the use of available resources.

Download the LIC Impact Study infographic

Recommendations from the PFR impact study

Depending on the different impacts and limits encountered by caregivers and LICs themselves, this impact study provides different recommendations :

For caregivers who may have difficulty understanding what PFRs are :

• Change the name of the PFRs and call them all the same
• Explain and reaffirm the objectives of PFRs: what should support for caregivers be used for? To find their “right place” in relation to the person being helped? To get out of welfare?
• Give legitimacy to PFRs among local actors who offer support to caregivers

For competition in support for caregivers within the same territory:

• Make PFRs resource centers so that they become the one-stop shop for caregivers in their territory

→ 77% of LICs consider that platforms should become centers of resources and expertise on support for caregivers

• Strengthen the financial resources of PFRs to enable them to recruit new professionals and fulfill their resource center missions

→ Obtaining funding from the funders’ conference

For platforms that offer support but little respite:

• Ensure that all PFRs offer a comprehensive basic respite offer (internal activity or via a service provider):
  • In structure (reception place) and at home
  • Short or long term
• Fund home respite more significantly
  • Long-term respite via relay or replacement at home
  • Short-term respite via the development of the “freed time” system

Concerning the support which mainly only targets the most exhausted caregivers:

• Implement prevention actions to raise awareness among future caregivers and support caregivers at the start of their role in order to reduce the proportion of caregivers in emergency situations
• Integrate caregivers more from the beginning of their journey to prevent caregivers from thinking that they are the only solution
  • Carry out/develop prevention actions
  • Accentuate partnerships and communication with the population

For active caregivers who are not very present:

• Extend opening hours to evenings and weekends
• Offer support adapted to their needs
  • inform them of their rights
  • help them communicate with their employer
  • help them develop their skills, etc.

In the event of a lack of a common definition of caregivers:

• Systematically offer support to post-carers and caregivers of people living in establishments within the meaning of the platforms
• Rely on the expertise of post-carers to suggest that they set up peer-help with users of the platform

If caregivers are requesting peer assistance:

• Rely on the expertise of PFR post-carers
• Organize discussion times supervised by a trained expert caregiver

If few links exist between PFR and home autonomy services:

• Develop partnerships or agreements with home services in order to direct caregivers towards existing respite solutions and check in advance the conformity of the services offered
• Train or raise awareness among home service professionals for identification

If caregivers have difficulty getting to the PFR:

• Territorial coverage of platforms to be expanded
• Organize hours at partner premises

In case of staff shortage:

• Increase the allocation of the ARS in connection with the active queue of PFRs
• Rely on former employees of the retired medical-social sector who could intervene as volunteers in addition to employees on territorial activities of the platforms to be expanded

Download the impact study on the support and respite platforms of the Federation Supporting PFR Carers