Young Onset Dementia - the difficult diagnosis and the stressful life for the whole family

The project consists of a qualitative (Aud Johannessen, postdoc) and a quantitative part (Lara Hvidsten, PhD-student), of which results will contribute to: 1) Describing, developing and evaluating a collaboration model between primary healthcare services and specialized healthcare services for people with young onset dementia (YOD) and families. 2) Cost-/effect analyses for the use of healthcare services in a subproject when data from the quantitative part is collected (RUD Lite). 3) Collaboration with the Dutch research team behind the Need-YD (Needs in Young onset Dementia) study. Qualitative part The aim of these four sub studies is to get an in-depth understanding of phenomena to allow analysis of peoples understanding of their own social world. Study I: We used longitudinal qualitative interviews to investigate how people living alone with young-onset dementia cope with everyday life and decision-making, the changes and needs. The interviews with YOD are conducted, six, 12, 18, 24 and 30 months after diagnosis. The study is published. Study II: A retrospective and prospective perspective in the interviews was used to investigate how is to be a spouse/cohabitation to a person with young-onset of frontotemporal dementia (FTD). The study is published. Study III: We used longitudinal interviews to investigate adult children?s experiences with support after their parent with YOD received a dementia diagnose. The informants were interviewed at inclusion and one year later. The study is published. Study IV: Qualitative interviews were used to investigate experiences of carers of people with YOD with the support contact service. The study is published. Study V: The data is gathered from Study III. This study investigates the stories of children of persons with YOD, and interprets their metaphorical expressions of their experiences as a source of understanding their situation and needs during the development and course of their parent?s dementia. The study is published. Study VI: The data in this case study is gathered from Study I. This data is then further developed with two new interviews to examine longitudinally the experience of quality of life with YOD as a single person. The study is published. Study VII: The data is gathered from four qualitative studies: Study VI and the case in study VII, and two earlier published studies with support contacts to persons with dementia and leaders in the municipalities included. The study was developed to investigate experiences of the support contact service in the dementia from different perspectives. The article is accepted for publication. Study VIII: The longitudinal data from Study I is supplemented with a set of three new longitudinal interviews conducted every six months. The article is in progress. Quantitative part A two-year observational Nordic multicenter study of quality of life (QOL) in people with young onset dementia and their families. Eighty-eight dyads were recruited from memory clinics in Norway, Denmark and Iceland from 2014 to 2015. The data collection ended in 2017. A reference group consisted of one hundred older people with dementia from a previous Norwegian study. The study assessments were made at inclusion, 12 and 24 months. Study I: Merging data with the Need-YD study we explored QOL in people with YOD. The results showed both met and unmet needs and depressive symptoms were associated with lower QOL, but positive relationship between QOL and increased awareness. Diagnosis was not associated with QOL. This study is published. Study II: Baseline assessment of QOL in 50 community-dwelling younger people with AD and 38 with FTD, factors associated with QOL was explored, and QOL was compared between younger and older people with dementia. We found no significant differences between the two diagnostic groups. Variables associated with QOL were depressive symptoms, neuropsychiatric symptoms and unmet needs. People with YOD had significantly better QOL compared to older people with dementia. This study is published. Study III: Assessment of development in QOL of people with young-onset AD and FTD over a two-year period, and factors associated with time trend including differences between the diagnostic groups. We identified groups of people following different trajectories of QOL and factors associated with development of poorer QOL in subgroups of people. The study has been submitted. Studie IV: Assessment of the QOL of family members of people with young-onset AD and FTD, and factors associated with time trend including differences between the diagnostic groups. We also compared QOL of family members of people with YOD to family members of people with late-onset dementia. This manuscript is in process. Study V: A study on the needs of the families in young-onset dementia. Qualitative interviews with the families are combined with quantitative data in mixed methods analysis. Finalized in 2019.

Prosjektet har medført økt oppmerksomhet mot gruppen yngre personer med demens. Studien er blitt presentert i flere sammenhenger der brede grupper av helsepersonell og brukere har vært presentert. Studien har gitt innspill til utarbeidelse og gjennomføring av demensplan 2020. Gjennom studien har man fått styrket internasjonal samarbeid for forskning på demens med tidlig debut. Forskergruppen var deltagere på en JPND-søknad initiert fra Nederland i år.

This is a 2 years observational study of young onset dementia patients (< 65 years, YOD) and their families to gain knowledge of the diagnostic assessment, the course of dementia, the patients/families needs and quality of life. It is in accordance with t he goal of the Norwegian Dementia plan 2015. Alzheimer's disease (AD) and Frontotemporal dementia (FTD) patients and their carers will be studied. Power analyses show that 75 patients/carers in each group are needed. For comparison 100 older AD patients will be added. 1.Patients will be recruited from seven memory clinics. FTD patients will be included from memory clinics in Sweden, Denmark and Island. Patients will be examined at baseline, 12 and 24 month. At patient level function in activities of dai ly living, depression, quality of life, coping, cognition and neuropsychiatric symptoms will be measured. At carer level carers' stress, depression, coping and QoL will be measured. At societal level use of health resources, and costs of care will be exa mined. 2. The diagnostic assessment, time from first symptom to diagnosis and the barriers and facilitators of diagnostic work-up will be examined. To explore barriers and facilitators focus group interviews with 7-10 family doctors and 7 -10 psychiatri st will be conducted. 3. The validity of diagnostic biomarkers; spinal fluid proteins and MRI will be examined. 4. To achieve information of patients' and carers' needs and service delivery we will collect information by: a questionnaire to carers at ba seline, 12 and 24 months and interviews with 10-15 patients and 20-25 carers within six months after the diagnostic assessment. The interview guide and the questionnaire, will be made after input from focus group nterviews with 5-7 patients, 5-7 carers, and 'Demensforbundet'. 5. In Oslo and Hamar we will develop a program on how to follow-up patients and carers over time in a co-operation between the memory clinics and the primary care service provi