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The experience of being in the family of a person with early-stage dementia - a qualitative interview study

Laila Mohrsen Busted, Dorthe S Nielsen, Regner Birkelund


Background: A dementia diagnosis has a major effect on the lives of many people in addition to the patient. Persons with dementia often depend on their families to maintain their independence and wellbeing. When illness strikes one family member it disrupts the entire family and has consequences for all family members. To improve caring for families with dementia, we need to better understand how family members experience being in the family of a person suffering from dementia.

Aim: To explore the experience of being in the family of a person suffering from early-stage dementia.

Method: A qualitative study was conducted with 17 family members of persons with dementia. The study used semi-structured interviews and data were analysed using Braun and Clarke’s model for thematic analysis.

Results: Through analysis and interpretation of the data, 4 themes were identified: (1) Living with a stranger in the family, (2) Being trapped in a changed relationship, (3) Being short of time and (4) Depending on each other in a new way within the family. The findings show that dementia illness has a large impact on relations within and across the family and relatives are forced to change their roles within the family.

Conclusion: The results of this study contribute to extending the knowledge about dementia and its impact on family members by illustrating changes in interactions within the family. Support from healthcare professionals may be beneficial in aiding family members to cope with the new situation within the family following the dementia diagnosis.


Anticipatory grief, anxiety, burden of illness, caring for carers, dementia, family experience, Family Health Conversations, impact of dementia, impact of dementia diagnosis, lived relationship, person-centered healthcare, psychological wellbeing of carer

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