“Nothing more will be changed here”: A qualitative study on the needs of people with dementia

Abstract

Background: To prepare nursing students optimally for their future daily working life as formal caregivers of people with age-related diseases such as dementia, the needs of this target group must be identified. We explored the needs of people with dementia based on Maslow's need hierarchy theory to systematically identify requirements of nursing professionals as part of the project Digital Training of Nursing and Health Management (DigiCare). Method:We conducted semi-structured interviews with people with dementia (n = 10) and caregivers of people with dementia (n = 32). We asked for their daily routines, favoured living spaces, leisure activities and experience of care. We analysed the data with qualitative content analysis according to Mayring. Categories were formed deductively based on the need levels defined by Maslow. Results:The survey showed that the deficiency needs (physiological needs, safety and security, love and belonging) were mostly met in people with dementia, although some respondents described that social needs were not sufficiently met. People with dementia felt loneliness caused by the loss of social contacts due to disease symptoms such as language impairment. The respondents made very ambivalent statements regarding growth needs (esteem, and self-actualization) of people with dementia. Some people with dementia and their relatives dealt openly with the disease, others described the stigmatisation of dementia and the resulting social rejection of those affected by the disease. Dementia, but also old age in general, was a barrier to cover the need of self-actualization. The majority of people with dementia we interviewed showed little willingness to accept external help and preferred a high degree of independence. Maintaining good health was mentioned as the most important wish for the future. The identification of further wishes was challenging, as the majority of respondents wanted to continue with their usual life without any changes. Conclusion:Our survey suggests that people with dementia need support in particular to cover the needs for belonging, esteem, and self-actualization. The systematic identification of needs carried out in this study can help to inform formal caregivers to deliver demand-oriented and person-centred care.