Faculty of Medicine

Lund University

Self-determination is key when people with intellectual disability age

2018-03-12

In recent decades, the average life-expectancy among intellectually disabled persons has significantly increased. By focusing on individuals and self-determination, managers in disability support and services (LSS) could safeguard the efforts for healthy ageing – meanwhile, there may also be a need for municipal strategies to secure such support. This was demonstrated in Maria Johansson’s licentiate thesis.

Maria Johansson

Maria Johansson is a nurse and lecturer, focusing on nursing education specialising in personal care. Since spring 2013, she has participated in the project “Healthy Ageing in People with Intellectual Disabilities from Managers’ Perspective”. Her participation resulted in a licentiate thesis in December last year.

The background for the study, among other things, was that the WHO noted that people with intellectual disabilities who reach old age do not have the same opportunities for active and healthy ageing as other people of the same age. Although international research on the subject has fallen behind, nevertheless it shows that health problems in intellectually disabled elderly persons are overlooked. The specific situation in Sweden is unclear.

Maria Johansson based her research on managers of group homes and open care activities within LSS (support and services based on the Swedish Act Concerning Support and Service for Persons with Certain Functional Impairments). These managers have a lot of influence over the conditions of good ageing, and the fulfilment of support, service and care needs.

Consequently, Maria Johansson focused on interviews with managers for LSS activities to find answers to her questions about healthy ageing among intellectually disabled persons. This qualitative study involved 20 people engaged in LSS activities, all at the management level of either group homes or open care activities within LSS.

Among other things, the study resulted in a theme – Ageing in dependency – that demonstrated the dependency on daily staff. The managers expressed that with ageing comes an increased and specific need for support and care, such as new aids and good knowledge of health issues. It is important to document this increased need, according to the interviewed managers. They also saw that, post-retirement, the intellectually disabled elderly missed out on activities previously offered by open care providers. Furthermore, volunteers or municipalities do not offer activities for this group, which means that once they retire, the activities are no longer available.

When elderly people do not have access to open care activities, their social networks shrink. The managers stress that the increased need for support among the elderly is individually adapted; however, the topic of ageing and the common needs of elderly people was not discussed at any considerable length during the interviews. Maria Johansson finds that there may be a need for municipal strategies and policy documents regarding healthy ageing for this group in order to meet their needs specifically.

Read Maria Johansson’s licentiate thesis

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