Bakker et al.1818. Bakker C , de Vugt ME, van Vliet D, Verhey F, Pijnenburg YA, Vernooij- Dassen MJ, et al. Unmet needs and health-related quality of life in young-onset dementia. Am J Geriatr Psychiatry. 2014;22:1121-30.
|
Investigate the relationship between HRQoL and unmet needs in YOD |
No interventions |
Cross-sectional |
People with AD, VaD, FTD, MD and dementia due to other causes, n = 215 Carers, n = 215 Netherlands |
QOL-AD administered to patients and the Dutch version of RAND-36 Health Survey and CANE administered to carers |
PwD's QoL is not associated with unmet needs. There is a relationship between unmet needs of PwD and reduced caregiver's QoL. |
Bakker et al.1919. Bakker C , de Vugt ME, van Vliet D, Verhey FR, Pijnenburg YA, Vernooij- Dassen MJ, et al. The relationship between unmet care needs in young-onset dementia and the course of neuropsychiatric symptoms: a two-year follow-up study. Int Psychogeriatr. 2014;26:1991-2000.
|
Investigate the needs of care and its relationship to the severity of neuropsychiatric symptoms |
No interventions |
Longitudinal |
People with AD, VaD, FTD, MD and dementia due to other causes, n = 215 Carers, n = 215 Netherlands |
CANE |
Caregivers and PwD agreed on the areas in which needs occurred. PwD experienced high levels of unmet needs in daytime activities, social company, intimate relationships, and information. |
Koopmans et al.2020. Koopmans RT, Reinders R, van Vliet D, Verhey FR, de Vugt ME, Bor H, et al. Prevalence and correlates of psychotropic drug use in community-dwelling people with young-onset dementia: the NeedYD-study. Int Psychogeriatr. 2014;26:1983-9.
|
Investigate PDU in Dutch community-dwelling people with YOD and the association between age, gender, dementia etiology and severity, symptoms of depression, disease awareness, unmet needs, and type of neuropsychiatric symptoms |
No interventions |
Cross-sectional |
People with AD, VaD, FTD and dementia not otherwise specified, n = 198 Netherlands |
The Dutch version of the CANE |
The majority of the sample had three or more unmet needs. There was no association between unmet needs and PDU. |
Hewitt et al.2121. Hewitt P, Watts C, Hussey J, Power K, Williams T. Does a structured gardening programme improve well-being in young-onset dementia? A preliminary study. Br J Occup Ther. 2013;76:355-61.
|
Identify the benefits of a gardening program in people with YOD |
Two gardening sessions per week for one year with multidisciplinary team |
Longitudinal |
People with AD, MD, FTD and dementia with Lewy bodies, n = 12 United Kingdom |
Bradford Well-being Profile |
There was a gradual increase in well-being indicators over the duration of the gardening project. |
Rosness et al.2222. Rosness TA, Mjorud M, Engedal K. Quality of life and depression in carers of patients with early onset dementia. Aging Ment Health. 2011;15:299-306.
|
Investigate QoL and depression in carers living with people with YOD |
No interventions |
Cross-sectional |
Carers of people with AD, FTD, VD and dementia with Lewy bodies, n = 49 Norway |
QoL-AD |
Carers' QoL corresponds positively with the increased age of carers and with PwD's insight. |
Bakker et al.2323. Bakker C, de Vugt ME, Vernooij-Dassen M, van Vliet D, Verhey FR, Koopmans RT. Needs in early onset dementia: a qualitative case from the NeedYD study. Am J Alzheimers Dis Other Demen. 2010;25:634-40.
|
Study unmet needs of YOD individuals and caregivers, and explore caregivers' experiences of transitions in care and health care services |
No interventions |
Longitudinal |
One 59 year-old AD patient and his wife (caregiver) Netherlands |
CANE and semi structured interviews |
PwD and his caregiver were confronted with the prolonged time to diagnosis, the fit between PwD and caregiver needs and the available health services, the strain of dedication to care versus the caregiver's own future perspective, and the need for response of health care services. |
Allen et al.2424. Allen J, Oyebode JR, Allen J. Having a father with young onset dementia: the impact on well-being of young people. Dement. 2009;8:455-80.
|
Explore the impact of having a father with EOD (AD, VD and FTD) on the well-being of young people |
No interventions |
Qualitative analysis of interviews |
Children aged 13 to 23 years old of people with AD, VD and FTD, n = 12 United Kingdom |
45-90 minutes open interviews |
Delay in diagnosis and the difficulty of dealing with confused behaviors in agile, physically well adults are primary stressors which had a major impact on children's well-being. |
Herrera et al.2525. Herrera MCZ, Alzate MEL, Marín CMV, Gómez JAS, Acevedo DCA, Restrepo FL, et al. Autovaloración de calidad de vida y envejecimiento em adultos com riesgo de Alzheimer. Invest Educ Enferm. 2008;26:24-35.
|
Describe self-assessed QoL in a group of middle-aged adult carriers and non-carriers of mutation E280A in gene Presenilin 1 for early onset familial AD |
No interventions |
Cross-sectional |
Carriers of the mutation, n = 27 Non-carriers, n = 39 Elderly adults, n = 96 Colombia |
WHOQOL-Bref |
Carrying this mutation did not influence self assessment of QoL. |
Williams et al.2626. Williams T, Dearden AM, Cameron IH. From pillar to post - a study of younger people with dementia. Psychiatr Bull. 2001;25:384-7.
|
Compare the incidence and prevalence of EOD in Leeds with the literature; identify the needs of PwD and their carers; examine existing services and access to them; identify gaps and make recommendations to improve the provision of services |
No interventions |
Cross-sectional |
People with AD, VD, lobar dementia, alcohol related dementia and other causes, n = 132 Carers, n = 49 United Kingdom |
Postal survey, a health needs assessment and a semi-structured interview with PwD, carers and professionals |
Two-thirds of carers reported that their well-being was poor or very poor; the longer the length of caring, the worse their well-being; PwD pointed out their distress at losing: abilities to read, write, converse and take part in everyday life. |