| 186 Reaching breaking point When the feeling of burden became too much for informal caregivers, they described reaching a breaking point where something had to change for them. In such cases, additional informal and formal support was often sought. Some informal caregivers who had experienced support said it had been really helpful. However, some informal caregivers held negative views on support services and were therefore reluctant to access them. I didn’t want people (coming in to help) and this was based on the other informal carers and their experience, the social services route and all the private carers route of having people coming and going. (informal caregiver 10) The need for support for informal caregivers was also recognized by social care workers. They noticed the physical and emotional toll on informal caregivers. Sometimes they tried to help and support family members the best they could through small actions such as comforting them or complimenting them for how they cared for the person living with dementia. So sometimes it’s just like a kind word. So even though I’m there for the customer, I can support the caregiver themselves as well. But when you go in and they seem like they might look a little bit down, they might feel like they’re failing. Just give them a little kind word to say, like, you’re doing OK. You’re doing great. There’s no right or wrong in this. (care worker 3) 2. The difficulty of navigating the social care system Once a need for care was identified, informal caregivers described the process of arranging social care as lengthy and complex. Whilst some had positive experiences, many informal caregivers became stressed by trying to access social care. Difficulties arose due to a lack of awareness of available social care services and how to access them. Navigating the social care system was often viewed as an additional responsibility for the informal caregiver. It is quite daunting when you’re confronted with having a person being diagnosed of who to turn to and where to get the help and the advice and support. (informal caregiver 6) Awareness of services – not knowing where to start Informal caregivers initially had little awareness of available services and financial issues and felt lost. Finding the right information proved to be
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