Research Article| Volume 122, P31-34, April 2019

Investigating the healthcare utilisation and other support needs of people with young-onset dementia


      • Of all people with dementia, 10% have young-onset dementia (i.e. onset before 65 years).
      • People with young-onset dementia most commonly die from complications of dementia, as opposed to dying 'with' dementia.
      • People with advanced young-onset dementia have a high risk of complications such as infections and swallowing problems.
      • Of those hospitalised with young-onset dementia, 70% had an indication for an advance care plan, but only 11% had one recorded.
      • Most people with young-onset dementia die in hospital not their usual abode, even though most people prefer to die at home.



      There exists a knowledge gap about the specific needs and utilisation of healthcare services by people with young-onset dementia (YOD), defined as being diagnosed before the patient is 65 years of age. Palliative care for dementia has received increasing attention, yet those with YOD have been overlooked.


      To explore healthcare utilisation, including at end-of-life, of people with YOD in Ireland, using hospital electronic records for case finding.


      We obtained Hospital In-Patient Enquiry data identifying all people with YOD admitted to three large urban hospitals between 2009 and 2016, and conducted a retrospective chart review. Information collected included demographics, medical and psychosocial history, functional capacity, last hospital admission, mortality and details regarding an advance care plan (ACP), using a standardised extraction form.


      Of the 121 patients identified, 50% were male. The commonest dementia types were: dementia secondary to Down’s syndrome (16%), vascular (14%), frontotemporal (13%) and Alzheimer’s disease (13%). 88% had ≥1 comorbid disease, including neurological (55%), cardiovascular (36%), and mental health illnesses (29%). Although 70% of people with YOD had an indication for an ACP (i.e. one or more markers of limited life expectancy), only 11% had any ACP recorded. 37% of patients had died, most commonly due to a complication of advanced dementia (e.g. aspiration pneumonia) rather than comorbid illness.


      People with YOD most commonly die from complications of dementia, as opposed to people with late-onset dementia, who often die with dementia. Advanced care planning appears to be suboptimal in people with YOD. More research is essential to inform future policies and services for this often neglected population.


      To read this article in full you will need to make a payment

      Purchase one-time access:

      Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online access
      One-time access price info
      • For academic or personal research use, select 'Academic and Personal'
      • For corporate R&D use, select 'Corporate R&D Professionals'


      Subscribe to Maturitas
      Already a print subscriber? Claim online access
      Already an online subscriber? Sign in
      Institutional Access: Sign in to ScienceDirect


        • YoungDementia U.K.
        Young Onset Dementia Facts & Figures.
        ([cited 2018 26 June]; Available from:)2018
        • Rossor M.N.
        • et al.
        The diagnosis of young-onset dementia.
        Lancet Neurol. 2010; 9: 793-806
        • Harvey R.J.
        • Skelton-Robinson M.
        • Rossor M.N.
        The prevalence and causes of dementia in people under the age of 65 years.
        J. Neurol. Neurosurg. Psychiatry. 2003; 74: 1206-1209
        • Pierce M.
        • Cahill S.
        • O’Shea E.
        Prevalence and Projections of Dementia in Ireland.
        Trinity College Dublin, Dublin, Ireland2014: 2011-2046
        • Draper B.
        • et al.
        Time to diagnosis in young-onset dementia and its determinants: the INSPIRED study.
        Int. J. Geriatr. Psychiatry. 2016; 31: 1217-1224
        • Mendez M.F.
        The accurate diagnosis of early-onset dementia.
        Int. J. Psychiatry Med. 2006; 36: 401-412
        • Cations M.
        • et al.
        Why aren’t people with young onset dementia and their supporters using formal services? Results from the INSPIRED study.
        PLoS One. 2017; 12: e0180935
        • Van Vliet D.
        • et al.
        Impact of early onset dementia on caregivers: a review.
        Int. J. Geriatr. Psychiatry. 2010; 25: 1091-1100
        • Sperlinger D.
        • Furst M.
        The service experiences of people with presenile dementia: a study of carers in one London borough.
        Int. J. Geriatr. Psychiatry. 1994; 9: 47-50
        • Gibson A.K.
        • Anderson K.A.
        • Acocks S.
        Exploring the service and support needs of families with early-onset Alzheimer’s disease.
        Am. J. Alzheimers Dis. Other Demen. 2014; 29: 596-600
        • Roach P.
        • Drummond N.
        It's nice to have something to do’: early‐onset dementia and maintaining purposeful activity.
        J. Psychiatr. Ment. Health Nurs. 2014; 21: 889-895
        • Haase T.
        Early-onset Dementia the Needs of Younger People With Dementia in Ireland.
        • Brody A.A.
        Dementia palliative care.
        Dementia Care. Springer, 2016: 247-260
        • van der Steen J.T.
        • et al.
        White paper defining optimal palliative care in older people with dementia: a Delphi study and recommendations from the European Association for Palliative Care.
        Palliat. Med. 2014; 28: 197-209
        • Treloar A.
        • Crugel M.
        • Adamis D.
        Palliative and end of life care of dementia at home is feasible and rewarding: results from the Hope for Home’study.
        Dementia. 2009; 8: 335-347
        • Fox S.
        • et al.
        Better palliative care for people with a dementia: summary of interdisciplinary workshop highlighting current gaps and recommendations for future research.
        BMC Palliat. Care. 2018; 17: 9
      1. Alzheimer Society of Ireland. Types of Dementia. [cited 2018 27 April]; Available from:

        • Covinsky K.E.
        • Pierluissi E.
        • Johnston C.B.
        Hospitalization-associated disability: “She was probably able to ambulate, but I’m not sure”.
        JAMA. 2011; 306: 1782-1793
        • Timmons S.
        • et al.
        Acute hospital dementia care: results from a national audit.
        BMC Geriatr. 2016; 16: 113
      2. Gerritsen, A.A.J., et al., Prevalence of Comorbidity in Patients With Young-Onset Alzheimer Disease Compared With Late-Onset: A Comparative Cohort Study. Journal of the American Medical Directors Association. 17(4): p. 318-323.

        • Mitchell S.L.
        • et al.
        Advanced dementia research in the nursing home: the CASCADE study.
        Alzheimer Dis. Assoc. Disord. 2006; 20: 166
        • McKeown K.
        Enabling More People to Die at Home: Making the Case for Quality Indicators As Drivers for Change on Place of Care and Place of Death in Ireland.
        Irish Hospice Foundation, 2014
        • Koedam E.L.
        • et al.
        Early-onset dementia is associated with higher mortality.
        Dement. Geriatr. Cogn. Disord. 2008; 26: 147-152
        • Heyman A.
        • et al.
        Early‐onset Alzheimer’s disease Clinical predictors of institutionalization and death.
        Neurology. 1987; 37: 980-980
        • van der Steen J.T.
        • et al.
        Factors associated with initiation of advance care planning in dementia: a systematic review.
        J. Alzheimers Dis. 2014; 40: 743-757
        • Robinson L.
        • et al.
        A qualitative study: professionals’ experiences of advance care planning in dementia and palliative care,’ a good idea in theory but …’.
        Palliat. Med. 2013; 27: 401-408
        • Gozalo P.
        • et al.
        End-of-life transitions among nursing home residents with cognitive issues.
        N. Engl. J. Med. 2011; 365: 1212-1221
        • Sarkar S.
        • Seshadri D.
        Conducting record review studies in clinical practice.
        J. Clin. Diagn. Res. 2014; 8: JG01-JG04