Christian Bakker1, Marjolein E de Vugt2, Deliane van Vliet2, Frans Verhey2, Yolande A Pijnenburg3, Myrra J F J Vernooij-Dassen4, Raymond T C M Koopmans5. 1. Florence, Mariahoeve, Centre for Specialised Care in Early Onset Dementia, The Hague, the Netherlands; Department of Primary and Community Care, Centre for Family Medicine, Geriatric Care and Public Health, Radboud University Nijmegen, Medical Centre, Nijmegen, the Netherlands. Electronic address: c.bakker@elg.umcn.nl. 2. Alzheimer Centre Limburg, Department of Psychiatry and Neuropsychology, Maastricht University, Maastricht, the Netherlands. 3. Alzheimer Center and Department of Neurology, Amsterdam, the Netherlands. 4. Department of Primary and Community Care, Centre for Family Medicine, Geriatric Care and Public Health, Radboud University Nijmegen, Medical Centre, Nijmegen, the Netherlands; Alzheimer Centre Nijmegen, Centre for Quality of Care Research, Nijmegen, the Netherlands; IQ Healthcare, Kalorama Foundation, Nijmegen, the Netherlands. 5. Department of Primary and Community Care, Centre for Family Medicine, Geriatric Care and Public Health, Radboud University Nijmegen, Medical Centre, Nijmegen, the Netherlands.
Abstract
OBJECTIVES: Young-onset dementia (YOD) causes specific challenges and issues that are likely to affect health-related quality of life (HRQOL). This study explored patient and caregiver HRQOL and its association with unmet needs in YOD. METHODS: A cross-sectional design was used to study 215 community-dwelling YOD patients and their primary caregivers. Multiple linear regression analyses were performed to determine the relationship between unmet needs assessed with the Camberwell Assessment of Need for the Elderly scale and patient and caregiver HRQOL, controlling for other variables such as demographic characteristics, patient functional status, neuropsychiatric symptoms, and caregiver sense of competence. RESULTS: Patient HRQOL was not associated with unmet needs. However, we found that the unmet needs of both patient and caregiver were related to several domains of caregiver HRQOL. CONCLUSIONS: This study shows that patient and caregiver unmet needs are related to caregiver HRQOL in YOD. However, the relationship between HRQOL and unmet needs is complex. The assessment of unmet needs within the context of HRQOL seems to be an important prerequisite for personalizing care in YOD. Adjusting supportive services to match the individual needs and preferences of these young patients and their caregivers is likely to enhance their quality of life.
OBJECTIVES: Young-onset dementia (YOD) causes specific challenges and issues that are likely to affect health-related quality of life (HRQOL). This study explored patient and caregiver HRQOL and its association with unmet needs in YOD. METHODS: A cross-sectional design was used to study 215 community-dwelling YOD patients and their primary caregivers. Multiple linear regression analyses were performed to determine the relationship between unmet needs assessed with the Camberwell Assessment of Need for the Elderly scale and patient and caregiver HRQOL, controlling for other variables such as demographic characteristics, patient functional status, neuropsychiatric symptoms, and caregiver sense of competence. RESULTS:Patient HRQOL was not associated with unmet needs. However, we found that the unmet needs of both patient and caregiver were related to several domains of caregiver HRQOL. CONCLUSIONS: This study shows that patient and caregiver unmet needs are related to caregiver HRQOL in YOD. However, the relationship between HRQOL and unmet needs is complex. The assessment of unmet needs within the context of HRQOL seems to be an important prerequisite for personalizing care in YOD. Adjusting supportive services to match the individual needs and preferences of these young patients and their caregivers is likely to enhance their quality of life.
Authors: Melanie T Gentry; Maria I Lapid; Jeremy Syrjanen; Kendrick Calvert; Samantha Hughes; Danielle Brushaber; Walter Kremers; Jessica Bove; Patrick Brannelly; Giovanni Coppola; Christina Dheel; Bradley Dickerson; Susan Dickinson; Kelley Faber; Julie Fields; Jamie Fong; Tatiana Foroud; Leah Forsberg; Ralitza Gavrilova; Deb Gearhart; Nupur Ghoshal; Jill Goldman; Jonathan Graff-Radford; Neill Graff-Radford; Murray Grossman; Dana Haley; Hilary Heuer; Ging-Yuek Hsiung; Edward Huey; David Irwin; David Jones; Lynne Jones; Kejal Kantarci; Anna Karydas; David Knopman; John Kornak; Joel Kramer; Walter Kukull; Diane Lucente; Codrin Lungu; Ian Mackenzie; Masood Manoochehri; Scott McGinnis; Bruce Miller; Rodney Pearlman; Len Petrucelli; Madeline Potter; Rosa Rademakers; Eliana Marisa Ramos; Katherine Rankin; Katya Rascovsky; Pheth Sengdy; Leslie Shaw; Nadine Tatton; Joanne Taylor; Arthur Toga; John Trojanowski; Sandra Weintraub; Bonnie Wong; Zbigniew Wszolek; Bradley F Boeve; Adam Boxer; Howard Rosen Journal: Alzheimers Dement Date: 2020-07-13 Impact factor: 21.566
Authors: Marleen R van Walsem; Emilie I Howe; Gunvor A Ruud; Jan C Frich; Nada Andelic Journal: Health Qual Life Outcomes Date: 2017-01-07 Impact factor: 3.186
Authors: Thamara Tapia Muñoz; Andrea Slachevsky; María O León-Campos; Michel Madrid; Alejandra Caqueo-Urízar; Gustav C Rohde; Claudia Miranda-Castillo Journal: BMC Geriatr Date: 2019-04-15 Impact factor: 3.921