Delaktig (även) på äldre dar Åldrande och delaktighet bland personer med intellektuell funktionsnedsättning som bor i gruppbostad

Sammanfattning: Participation of people in all ages is one of the main goals in Swedish disability policy. Despite this, ageing and becoming old with intellectual disability has been given very little attention in policy documents and guidelines regarding support and service provided for this group. This thesis aims to explore ageing and participation among older people with intellectual disabilities who live in a group homes in accordance to the Swedish Disability Act. The focus has been on the group of people who were born before or around 1960. This group belongs to a generation that share unique experiences. They have lived a long life with disability, and they have experienced first-hand the development of the Swedish disability policy that started in the 1960s and resulted in today’s disability policy. These experiences carried through life course are likely to influence this group’s opportunities to participate as they age and reach later life. The thesis has a multiple methodological approach. Participant observations were executed and combined with individual semi-structured interviews with older people with intellectual disabilities as well as group home staff. The results of this thesis show that there is a discrepancy between how older people with intellectual disabilities experience ageing and later life and how these in turn are described by the staff. The thesis also reveals how aging and becoming old is not given particular attention to in everyday discussions in the group home, and that aging is understood mainly as a physical phenomenon. The results show that the formal organizational culture of the group home is weak in relation to ageing and becoming old with intellectual disability. This is because the staff perceives a lack of preparation, discussion and working methods on how to support participation among older residents. The results also show, however, that the residents’ age does play an important role for the staff’s perceptions and attitudes regarding participation of the older residents. The concept of participation is described and  operationalized as a social contextual doing, and as an aspiration to create a sense of coherence or experience of meaning and security at home. Finally, this thesis underlines that the life course unique to persons growing old with intellectual disabilities may influence the opportunities for and the experience of participation in the group home.