The significance of a dementia diagnosis from the perspective of the family caregivers: a qualitative study

Abstract Background With the anticipated increase in dementia prevalence over the coming decade, understanding the experience of receiving a dementia diagnosis for people living with cognitive impairment remains limited. This study aims to explore the implications of a family member with cognitive i...

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Main Authors: Inger Molvik, Grete Kjelvik, Geir Selbæk, Anne Marie Mork Rokstad
Format: Article
Language:English
Published: BMC 2025-04-01
Series:BMC Health Services Research
Subjects:
Online Access:https://doi.org/10.1186/s12913-025-12657-1
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author Inger Molvik
Grete Kjelvik
Geir Selbæk
Anne Marie Mork Rokstad
author_facet Inger Molvik
Grete Kjelvik
Geir Selbæk
Anne Marie Mork Rokstad
author_sort Inger Molvik
collection DOAJ
description Abstract Background With the anticipated increase in dementia prevalence over the coming decade, understanding the experience of receiving a dementia diagnosis for people living with cognitive impairment remains limited. This study aims to explore the implications of a family member with cognitive impairment receiving a dementia diagnosis or not from the perspective of their next of kin. Methods A qualitative descriptive design was applied using individual interviews for data collection. Participants were recruited based on the cognitive function level of their family members, which was compatible with dementia as assessed with the Montreal Cognitive Assessment Scale (MoCA). The sample consisted of eight participants, comprising family members of five individuals with confirmed dementia diagnoses and three undiagnosed. The analysis was performed using four steps of systematic text condensation to discern codes, categories, and the overarching theme. Results Three main categories were created: (1) Impact of observed cognitive decline, (2) Impact of diagnosis on service engagement, and (3) Support and follow-up for family caregivers. The findings show that next of kin who have received a dementia diagnosis for their family members are more proactive in seeking help and services, are better informed about available resources, and are more concerned about future challenges. On the other hand, next of kin to family members without a diagnosis are more inclined to handle the situation on their own, have less access to information and services, and generally express less concern about future problems. Conclusion The study reveals the benefits of receiving a timely dementia diagnosis in shaping more effective support systems and policies. This ensures that the next of kin and the person with cognitive impairment can navigate the complexities of dementia with greater confidence and preparedness, thereby enhancing their quality of life.
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spelling doaj-art-936a2d95b0764fbeb67a7e9db47832c52025-08-20T02:08:08ZengBMCBMC Health Services Research1472-69632025-04-0125111010.1186/s12913-025-12657-1The significance of a dementia diagnosis from the perspective of the family caregivers: a qualitative studyInger Molvik0Grete Kjelvik1Geir Selbæk2Anne Marie Mork Rokstad3The Norwegian National Centre for Ageing and Health, Vestfold Hospital TrustThe Norwegian National Centre for Ageing and Health, Vestfold Hospital TrustThe Norwegian National Centre for Ageing and Health, Vestfold Hospital TrustThe Norwegian National Centre for Ageing and Health, Vestfold Hospital TrustAbstract Background With the anticipated increase in dementia prevalence over the coming decade, understanding the experience of receiving a dementia diagnosis for people living with cognitive impairment remains limited. This study aims to explore the implications of a family member with cognitive impairment receiving a dementia diagnosis or not from the perspective of their next of kin. Methods A qualitative descriptive design was applied using individual interviews for data collection. Participants were recruited based on the cognitive function level of their family members, which was compatible with dementia as assessed with the Montreal Cognitive Assessment Scale (MoCA). The sample consisted of eight participants, comprising family members of five individuals with confirmed dementia diagnoses and three undiagnosed. The analysis was performed using four steps of systematic text condensation to discern codes, categories, and the overarching theme. Results Three main categories were created: (1) Impact of observed cognitive decline, (2) Impact of diagnosis on service engagement, and (3) Support and follow-up for family caregivers. The findings show that next of kin who have received a dementia diagnosis for their family members are more proactive in seeking help and services, are better informed about available resources, and are more concerned about future challenges. On the other hand, next of kin to family members without a diagnosis are more inclined to handle the situation on their own, have less access to information and services, and generally express less concern about future problems. Conclusion The study reveals the benefits of receiving a timely dementia diagnosis in shaping more effective support systems and policies. This ensures that the next of kin and the person with cognitive impairment can navigate the complexities of dementia with greater confidence and preparedness, thereby enhancing their quality of life.https://doi.org/10.1186/s12913-025-12657-1DementiaCognitive impairmentNext of kinExperienceOlder adultsTimely diagnosis
spellingShingle Inger Molvik
Grete Kjelvik
Geir Selbæk
Anne Marie Mork Rokstad
The significance of a dementia diagnosis from the perspective of the family caregivers: a qualitative study
BMC Health Services Research
Dementia
Cognitive impairment
Next of kin
Experience
Older adults
Timely diagnosis
title The significance of a dementia diagnosis from the perspective of the family caregivers: a qualitative study
title_full The significance of a dementia diagnosis from the perspective of the family caregivers: a qualitative study
title_fullStr The significance of a dementia diagnosis from the perspective of the family caregivers: a qualitative study
title_full_unstemmed The significance of a dementia diagnosis from the perspective of the family caregivers: a qualitative study
title_short The significance of a dementia diagnosis from the perspective of the family caregivers: a qualitative study
title_sort significance of a dementia diagnosis from the perspective of the family caregivers a qualitative study
topic Dementia
Cognitive impairment
Next of kin
Experience
Older adults
Timely diagnosis
url https://doi.org/10.1186/s12913-025-12657-1
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