Younger people with dementia: attuning care to fit their needs

Transcription

1 Younger people with dementia: attuning care to fit their needs Dr. Christian Bakker, MSc. Florence Centre for specialized care in Young-onset Dementia, The Hague, The Netherlands Radboud University Medical Centre, Nijmegen, The Netherlands Maastricht University, The Netherlands

2 YOD in the Netherlands people with YOD in the Netherlands (Harvey, 1998; Ikejima, 2009; Withall, 2012; WHO 2012) Dutch Young-onset Dementia Knowledge Centre 20 care organizations specialized in YOD services + the Dutch Alzheimer Society National YOD Care Program Educational program health care professionals Collaboration with RadboudUMC and Maastricht University in the BEYOND-study and the NeedYD-Study 2

3 The Needs in Young onset Dementia (NeedYD) study Investigate the course of young-onset dementia (i.e. cognitive functioning, problem behaviour, caregiver functioning) Explore care needs of young onset dementia patients and their caregivers Explore what factors are related to the use of (in)formal care, caregiver burden and the time to institutionalization in community dwelling young-onset dementia patients Compare these issues with late-onset dementia 3

4 Time to diagnosis YOD: 4.4 LOD: 2.8 van Vliet D, de Vugt ME, Bakker C, et al. Time to diagnosis in young-onset dementia as compared with late-onset dementia. Psychol Med 2012:

5 Initial diagnosis 13% 5% 4% Dementia Depression/burnout 23% 55% Other psychological diagnosis Somatic diagnosis No diagnosis van Vliet D, de Vugt ME, Bakker C, et al. Caregivers' perspectives on the prediagnostic period in early onset dementia: a long and winding road. International psychogeriatrics / IPA 2011:

6 Final diagnosis 5% 3% 4% 12% Alzheimers disease Frontotemporal dementia 19% 57% Vascular Dementia Mixed dementia Lewy body dementia Other Cause 6

7 What have we learned? Raising awareness among general public and health care professionals YOD educational program for general practioners, elderly care physicians, occupational physicians, insurance company doctors and other health care professionals 7

8 Awareness People with YOD People with LOD 0 months 6 months 12 months van Vliet D, de Vugt ME, Kohler S, et al. Awareness and its association with affective symptoms in young-onset and late-onset Alzheimer disease: a prospective study. Alzheimer disease and associated disorders 2013; 27(3):

9 90% 80% 70% 60% 50% Met need 20.4% Unmet need 20.4% 20.4% 15.8% 11.2% 40% 30% 20% 23.0% 13.2% 11.8% 10% 0% 16.4% 28.3% 43.4% 51.3% 65.8% 3.9% 22.4% 66.4% Bakker C, de Vugt ME, van Vliet D, et al. The relationship between unmet care needs in young-onset dementia and the course of neuropsychiatric symptoms: a two-year follow-up study. International psychogeriatrics / IPA 2013:

10 Unmet Care Needs and Challenging Behaviours Challenging behaviour Unmet care needs Person with YOD Bakker C, de Vugt ME, van Vliet D, et al. The relationship between unmet care needs in young-onset dementia and the course of neuropsychiatric symptoms: a two-year follow-up study. International psychogeriatrics / IPA 2013: 1-10.

11 Informal care vs. Formal care in YOD Formal care 25% Informal care 75% Bakker C, de Vugt ME, van Vliet D, et al. The Use of Formal and Informal Care in Early Onset Dementia: Results From the NeedYD Study. AJGP,

12 Time to Institutionalization (in years) YOD LOD Bakker C, de Vugt ME, van Vliet D, et al. Predictors of the time to institutionalization in young- versus late-onset dementia: results from the Needs in Young Onset Dementia (NeedYD) study. Journal of the American Medical Directors Association 2013; 14(4):

13 Mariahoeve Centre for Specialized Care in Young-onset dementia Where Science meets Clinical Practice

14 Modular care program Someone who wants to have meaningfull daytime activities and the company of others Someone who is easily agitated and might be unaware of the dementia someone with apathy as a core symptom Someone who experiences difficulties because of medical comorbidity Support group Psychologist Recreational activities Medical care Occupational therapy Group fitness Outdoor activities Individual counseling Non verbal therapies Occupational therapy Physiotherapy Physiotherapy Individual counseling Psycho-education family Structured program Hotel service Adapted work Buddy Psycho-education family Diagnostic services 14

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16 Conclusions I Casemanagement a prerequisite for integrated caregiving in YOD The systematic evaluation of care needs is essential for a good fit with care and support. Looking at challenging behaviors within the context of care needs. Psychotropic drug use should be reviewed regularly. 16

17 Conclusions II Advanced care planning helps Looking at challenging behaviours, especially apathy Enhance caregivers sense of competence Design (residential) services to fit the needs of people with YOD and their families. 17

18 Thank you! Prof. Dr. Frans Verhey Dr. Marjolein de Vugt Joany Millenaar Dr. Yolande Pijnenburg Prof. Dr. Raymond Koopmans Prof. dr. Myrra Vernooij-Dassen Dr. Deliane van Vliet Adrie Gerritsen