The meaning of being young with dementia and living at home

  • Dag Rostad Psychiatric service, Rennebu municipality Rennebu, Norway.
  • Ove Hellzén Center for Care Research, Mid-Norway; Department of Health Sciences, Mid Sweden University, Sundsvall, Sweden, .
  • Ingela Enmarker | ingela.enmarker@hint.no Center for Care Research, Mid-Norway; Faculty of Health Sciences, Nord-Trøndelag University College, Namsos, Norway.

Abstract

Studies that explore the subjective experiences of younger people with dementia living at home are rare. Therefore, the aim of this study was to gain an understanding of the lived experience of younger persons (<65 years) who lived at home and suffered from earlyonset dementia, and the meanings that might be found in those experiences. The researchers conducted a qualitative study using a phenomenological hermeneutic approach. Data were collected through narrative interviews with four informants. Two men and two women ages 55 to 62 participated. Three of the informants lived with their spouses, and one lived alone, close to his children. The informants’ subjective experiences revealed the following four key themes: entrapment by circumstances, loss of humanity, the preservation of hope and willpower, and the desire to ensure one’s quality of life. These themes provide a deeper understanding of the experiences of younger people with dementia who live at home. The theme of preserving hope and willpower rebuts prejudicial contentions that life with Alzheimer’s syndrome does not have anything more to offer and may be seen as diminishing a patient’s humanity. Patients’ autonomy and self-determination should not be ignored. In all phases of the progression of dementia, the person in charge of giving care to the relative with dementia should be ethically aware of and reflective to the progress of his/her illness.

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Author Biographies

Dag Rostad, Psychiatric service, Rennebu municipality Rennebu

RN, Master in Psychiatric care, Health coordination mental health

  

Ove Hellzén, Center for Care Research, Mid-Norway; Department of Health Sciences, Mid Sweden University, Sundsvall, Sweden
RN, PhD, Professor
Ingela Enmarker, Center for Care Research, Mid-Norway; Faculty of Health Sciences, Nord-Trøndelag University College, Namsos
RN, PhD, Assoc. professor
Published
2013-08-06
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Section
Original Articles
Keywords:
dementia, living at home, early-onset dementia, interview, phenomenological hermeneutic analysis.
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How to Cite
Rostad, D., Hellzén, O., & Enmarker, I. (2013). The meaning of being young with dementia and living at home. Nursing Reports, 3(1), e3. https://doi.org/10.4081/nursrep.2013.e3