Informal caregiving: perceived needs

With the increasing population of persons over the age of 65 who need daily assistance in Spain, there is considerable need to better understand informal caregivers' views, particularly about the resources that are available to them, or should be available to them. With that purpose in mind, a grounded theory method was used with focus groups in Barcelona, Malaga, Seville, and Tenerife. All of the participants were caring for family members with dementia, cancer, or other neurodegenerative conditions. The findings generated 86 codes, which were grouped into two categories: understanding the experience of caregiving, and caregiving resources. The first category was the need for caregivers to talk about their experiences and to be listened to. The second category included the presence of resources and support requirements. The caregivers said that their ability as caregivers was limited; many did not know what resources were available or how to locate new resources. Many caregivers are carrying out their role dutifully, but feel isolated, suggesting that there is a lack of social understanding and policies about informal caregivers in Spain.