Acessibilidade / Reportar erro

Quality of life in young onset dementia: an updated systematic review

Qualidade de vida na demência de início precoce: uma revisão sistemática atualizada

Abstracts

Introduction

Young onset dementia (YOD) develops before 65 years of age and has specific age-related adverse consequences for quality of life (QoL). We systematically examined factors related to the QoL of people with YOD and their caregivers.

Method

This systematic review used the PRISMA methodology. The literature search was undertaken on July 5, 2015, using Cochrane, PubMed, SciELO, PsycINFO, Scopus and Thomson Reuters Web of Science electronic databases. The search keywords included early onset and young onset combined with, dementia, Alzheimer, vascular dementia, mixed dementia, frontotemporal dementia, quality of life, well-being and unmet needs. Nine studies were included. We revised objectives, study design, sample, instruments and results related to QoL.

Results

People with YOD rated their own QoL significantly higher than their caregivers. Greater awareness of disease among people with YOD is associated with better QoL in caregivers. A relationship was found between unmet needs and daytime activities, lack of companionship and difficulties with memory. Issues associated with unmet needs were prolonged time to diagnosis, available health services and lack of caregiver's own future perspective.

Conclusion

Consideration should be given to conducting investigations with more homogeneous samples and use of a clear concept of QoL. The present study highlights the need for future research in a wider range of countries, using instruments specifically for YOD. It would be interesting if studies could trace parallels with late onset dementia groups.

Young onset dementia; quality of life; well-being; unmet needs; people with young onset dementia; caregivers


Introdução

A demência de início precoce se desenvolve antes dos 65 anos e possui consequências adversas específicas relacionadas à idade para a qualidade de vida (QV). Nós examinamos de forma sistemática fatores ligados à QV de pessoas com demência de início precoce e seus cuidadores.

Método

Foi utilizada a metodologia PRISMA, com busca nas bases de dados Cochrane, PubMed, SciELO, PsycINFO, Scopus e Thomson Reuters Web of Science electronic em 5 de julho de 2015. Foi utilizada a palavra-chave início precoce combinada com demência, Alzheimer, demência vascular, demência mista, demência frontotemporal, qualidade de vida, bem-estar e necessidades não atendidas. Nove estudos foram incluídos. Foram revisados os objetivos, desenho, amostra, instrumentos e resultados relacionados à QV.

Resultados

Pessoas com demência de início precoce pontuaram sua própria QV significantemente mais alta que seus cuidadores. A maior consciência da doença entre essas pessoas é associada com melhor QV dos cuidadores. Foi encontrada relação entre necessidades não atendidas e atividades diárias, falta de companhia e dificuldades com a memória. A demora na definição do diagnóstico, os serviços de saúde disponíveis e a falta de perspectivas futuras do cuidador foram fatores associados às necessidades não atendidas.

Conclusão

Deve-se considerar a possibilidade de conduzir investigações com amostras mais homogêneas e um conceito mais claro de QV. O presente estudo chama atenção para a necessidade de pesquisas em mais países, utilizando instrumentos específicos para pessoas com demência de início precoce. Seria interessante se estudos pudessem traçar paralelos com grupos de início tardio.

Demência de início precoce; qualidade de vida; bem-estar; necessidades não atendidas; pessoas com demência de início precoce; cuidadores


Introduction

Young onset dementia (YOD) is defined as a dementia disorder that develops before 65 years of age.11. Withall A, Draper B, Seeher K, Brodaty H. The prevalence and causes of younger onset dementia in Eastern Sydney, Australia. Int Psychogeriatr. 2014;26:1955-65.

2. Vieira RT, Caixeta L, Machado S, Silva AC, Nardi AE, Arias-Carrión O, et al. Epidemiology of early-onset dementia: a review of the literature. Clin Pract Epidemiol Ment Health. 2013;9:88-95.

3. Shankar N. Clinical profile of young-onset dementia: a study from Eastern India. Neurol Asia. 2008;13:103-8.

4. Cruz BS. Levantamento epidemiológico de demência pré-senil no instituto de psiquiatria e centro de doenças de Alzheimer da UFRJ [monograph]. Rio de Janeiro: IPUB/UFRJ; 2002. 18 p. Especialização em Psiquiatria.
-55. Harvey RJ. Young onset dementia: epidemiology, clinical symptoms, family burden, support and outcome. London: Dementia Research Group; 1998. Estimated prevalence rates of YOD range from 42.3 to 54 per 100,000 cases of dementia.66. Harvey RJ, Skelton-Robinson M, Rossor MN. The prevalence and causes of dementia in people under the age of 65 years. J Neurol Neurosurg Psychiatry. 2003;74:1206-9.Alzheimer's disease is the most frequent cause, followed by vascular and frontotemporal dementia, respectively.11. Withall A, Draper B, Seeher K, Brodaty H. The prevalence and causes of younger onset dementia in Eastern Sydney, Australia. Int Psychogeriatr. 2014;26:1955-65.

2. Vieira RT, Caixeta L, Machado S, Silva AC, Nardi AE, Arias-Carrión O, et al. Epidemiology of early-onset dementia: a review of the literature. Clin Pract Epidemiol Ment Health. 2013;9:88-95.
-33. Shankar N. Clinical profile of young-onset dementia: a study from Eastern India. Neurol Asia. 2008;13:103-8.,77. Jefferies K, Agrawal N. Early-onset dementia. Adv Psychiatr Treat. 2009;15:380-8.,88. Werner P, Stein-Shvachman I, Korczyn AD. Early onset dementia: clinical and social aspects. Int Psychogeriatr. 2009;21:631-6. Neuropsychological impairments and behavioral changes may vary according to the specifics of each dementia disorder. In cases of young onset Alzheimer's disease (AD), for instance, there is a greater initial loss of cognitive abilities.88. Werner P, Stein-Shvachman I, Korczyn AD. Early onset dementia: clinical and social aspects. Int Psychogeriatr. 2009;21:631-6. These people are more likely to present deficits in attention, visuospatial function and language.88. Werner P, Stein-Shvachman I, Korczyn AD. Early onset dementia: clinical and social aspects. Int Psychogeriatr. 2009;21:631-6. Conversely, in late onset Alzheimer's disease, short-term memory loss is usually prominent.88. Werner P, Stein-Shvachman I, Korczyn AD. Early onset dementia: clinical and social aspects. Int Psychogeriatr. 2009;21:631-6. Moreover, people with young onset Alzheimer's disease exhibit a faster rate of decline compared to people with late onset AD.77. Jefferies K, Agrawal N. Early-onset dementia. Adv Psychiatr Treat. 2009;15:380-8.,99. Svanberg E, Spector A, Stott J. The impact of young onset dementia on the family: a literature review. Int Psychogeriatr. 2011;23:356-71. In general, YOD has specific features that may be a challenge for diagnosis and management and for organization of appropriate health services.

Young onset dementia is an important psychosocial and medical health problem with specific age-related adverse consequences for both younger individuals and their families.1010. Koopmans R, Rosness T. Young onset dementia - what does the name imply? Int Psychogeriatr. 2014;26:1931-3. Usually, these individuals have more neuropsychiatric symptoms, especially in frontotemporal dementia, where the initial poor executive function is often overlooked.33. Shankar N. Clinical profile of young-onset dementia: a study from Eastern India. Neurol Asia. 2008;13:103-8. This can lead physicians to incorrectly diagnose a psychiatric disorder, causing inadequate treatment and delay before the correct diagnosis is made.33. Shankar N. Clinical profile of young-onset dementia: a study from Eastern India. Neurol Asia. 2008;13:103-8.,88. Werner P, Stein-Shvachman I, Korczyn AD. Early onset dementia: clinical and social aspects. Int Psychogeriatr. 2009;21:631-6.,1111. Moslow K. Early onset dementia: a national challenge, a future crisis. Washington: Alzheimer's Association; 2006. Furthermore, the onset of young onset neurodegenerative dementia is usually insidious and the first signs tend to be ignored or explained away as stress or fatigue caused by work or everyday pressures. Dementia is not a disease that one expects to find in younger people, so it may take longer before the first suspicions are raised that a dementia process may be taking place.44. Cruz BS. Levantamento epidemiológico de demência pré-senil no instituto de psiquiatria e centro de doenças de Alzheimer da UFRJ [monograph]. Rio de Janeiro: IPUB/UFRJ; 2002. 18 p. Especialização em Psiquiatria.,88. Werner P, Stein-Shvachman I, Korczyn AD. Early onset dementia: clinical and social aspects. Int Psychogeriatr. 2009;21:631-6.

Typically, individuals with YOD are still in the labor market when the diagnosis is made.1212. van Vliet D, de Vugt ME, Köhler S, Aalten P, Bakker C, Pijnenburg YA, et al. Awareness and its association with affective symptoms in young-onset and late-onset Alzheimer disease: a prospective study. Alzheimer Dis Assoc Disord. 2013;27:265-71. They are usually family providers (which can cause severe economic disruption), still have children and/or dependents, drive vehicles and are physically healthy.11. Withall A, Draper B, Seeher K, Brodaty H. The prevalence and causes of younger onset dementia in Eastern Sydney, Australia. Int Psychogeriatr. 2014;26:1955-65.,44. Cruz BS. Levantamento epidemiológico de demência pré-senil no instituto de psiquiatria e centro de doenças de Alzheimer da UFRJ [monograph]. Rio de Janeiro: IPUB/UFRJ; 2002. 18 p. Especialização em Psiquiatria.,77. Jefferies K, Agrawal N. Early-onset dementia. Adv Psychiatr Treat. 2009;15:380-8.,88. Werner P, Stein-Shvachman I, Korczyn AD. Early onset dementia: clinical and social aspects. Int Psychogeriatr. 2009;21:631-6.,1212. van Vliet D, de Vugt ME, Köhler S, Aalten P, Bakker C, Pijnenburg YA, et al. Awareness and its association with affective symptoms in young-onset and late-onset Alzheimer disease: a prospective study. Alzheimer Dis Assoc Disord. 2013;27:265-71. The life changes involved in the onset of the disease and a more preserved awareness1212. van Vliet D, de Vugt ME, Köhler S, Aalten P, Bakker C, Pijnenburg YA, et al. Awareness and its association with affective symptoms in young-onset and late-onset Alzheimer disease: a prospective study. Alzheimer Dis Assoc Disord. 2013;27:265-71. can cause greater psychosocial impact than in late onset dementia (LOD). The marked age differences make it difficult for people with YOD to integrate into mainstream dementia services.11. Withall A, Draper B, Seeher K, Brodaty H. The prevalence and causes of younger onset dementia in Eastern Sydney, Australia. Int Psychogeriatr. 2014;26:1955-65.

Considering the particular issues of YOD, their carers are expected to have specific problems, such as life stage challenges, diagnostic difficulties, problems coping with symptoms and relationship changes, including issues surrounding intimacy and sexuality for partners.99. Svanberg E, Spector A, Stott J. The impact of young onset dementia on the family: a literature review. Int Psychogeriatr. 2011;23:356-71. These aspects suggest that the needs of this group of people and their families may be different, leading to a considerable impairment in their quality of life (QoL) and sense of well-being.

Quality of life, well-being and unmet needs are closely related concepts.1313. Galinha IC, Ribeiro JLP. História e evolução do conceito de bem-estar subjectivo. Psic Saude & Doenças. 2005;6:203-14. They are complex because they involve a subjective perception related to physical, social and psychological variables. Needs that are not fulfilled are likely to have an adverse effect on people with dementia and caregiver well-being and may negatively influence their QoL.1414. Lauriks S, Reinersmann A, Van der Roest HG, Meiland FJ, Davies RJ, Moelaert F, et al. Review of ICT-based services for identified unmet needs in people with dementia. Ageing Res Rev. 2007;6:223-46. Therefore, in addition to assessing objective patient-related measures (including memory and functional abilities), environmental factors such as social support and material conditions, value systems and coping styles also play a role in the equation.1515. Sousa MF, Santos RL, Arcoverde C, Simões P, Belfort T, Adler I, et al. Quality of life in dementia: the role of non-cognitive factors in the ratings of people with dementia and family caregivers. Int Psychogeriatr.2013;25:1097-105.,1616. Berwig M, Leicht H, Gertz HJ . Critical evaluation of self-rated quality of life in mild cognitive impairment and Alzheimer's disease-further evidence for the impact of anosognosia and global cognitive impairment. J Nutr Health Aging. 2009;13:226-30. Studies report that, in dementia, aspects that impact on well-being and perception of QoL are age, depressed mood, quality of relationship of the dyad, awareness of the disease and neuropsychiatric symptoms, while difficulties with cognitive and functional abilities do not normally interfere.1515. Sousa MF, Santos RL, Arcoverde C, Simões P, Belfort T, Adler I, et al. Quality of life in dementia: the role of non-cognitive factors in the ratings of people with dementia and family caregivers. Int Psychogeriatr.2013;25:1097-105.However, these findings are related to LOD and there are concerns about how the specific problems of YOD affect the QoL of people with dementia and their caregivers.

Within this context, this systematic review aims to obtain and compile more precise, up-to-date information on the factors related to QoL, well-being and unmet needs in YOD, in order to enrich the literature on the subject.

Methods

This systematic review was conducted using the methodology suggested in the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) criteria.1717. Moher D, Liberati A, Tetzlaff J, ltman DG; PRISMA Group. Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. Ann Intern Med. 2009;151:264-9, W64. The search for literature was undertaken on July 5, 2015, using Cochrane, PubMed, SciELO, PsycINFO, Scopus and Thomson Reuters Web of Science electronic databases. The search keywords included early onset dementia, young onset dementia, early onset Alzheimer, young onset Alzheimer, early onset vascular dementia, young onset vascular dementia, early onset mixed dementia, young onset mixed dementia, early onset front temporal dementia and young onset frontotemporal dementia, which were combined with quality of life, well-being and unmet needs. We also performed a manual search by revising the reference lists of all papers selected.

The inclusion criteria for articles were as follows: cross-sectional or longitudinal studies, randomized or nonrandomized, with or without a control group, with caregivers and/or people with young onset Alzheimer's disease, vascular dementia, mixed or frontotemporal dementia, at all stages of severity. Systematic reviews and opinion papers were excluded, as well as articles which addressed other neurological disorders, psychiatric or late-onset dementias, and those that did not study QoL, well-being or unmet needs.

Initially, all abstracts selected were read by two authors (MATB and MCND). Articles were reviewed taking into account six characteristics: Objectives, interventions, study design, sample, instruments used and results related to the QoL of caregivers and/or people with a diagnosis of YOD. All authors revised the papers selected in order to reach a consensus.

Results

The Cochrane database was searched to identify systematic reviews with the same theme. We found none. The initial database searches produced 324 articles. Thirteen were found on PsycINFO and 31 on Scopus, 54 were identified on PubMed and 225 on Thomson Reuters Web of Science and 1 article was found on SciELO. After duplicates were removed (n = 180), 146 studies not meeting inclusion criteria were eliminated, leaving seven studies which were selected for inclusion in this systematic review. Two further studies were identified by manually searching the references in the selected articles. Therefore, a final total of nine papers had been selected by the end of this search process (Figure 1). Main results are shown in Table 1.

Figure 1
- Flow of information through the different phases of the systematic review

Table 1
- Characteristics of the studies selected

Concepts

YOD

Three articles used the term EOD,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.,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.,2626. Williams T, Dearden AM, Cameron IH. From pillar to post - a study of younger people with dementia. Psychiatr Bull. 2001;25:384-7. one study used the term early onset familial AD,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.and most of the papers, five of them, used the term YOD.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.

19. 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.

20. 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.
-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.,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. More than half of the papers clearly conceptualize the concept of YOD.

QoL

The concept of QoL was assessed in three studies.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.,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.,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. Two studies did not define QoL.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.,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. One article defined QoL as the result of an individual valuation process of many dimensions that interact between the person and his environment, including subjective and objective living conditions.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.

Well-being

Well-being as a concept was identified in three papers. However, there was no specific definition of the concept.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.,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.,2626. Williams T, Dearden AM, Cameron IH. From pillar to post - a study of younger people with dementia. Psychiatr Bull. 2001;25:384-7.

Unmet needs

The most frequent concept found was (un)met needs, which appears in four of the eight studies.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.

19. 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.
-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.,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. A need was defined as a situation in which one experiences difficulty in the social, physical, psychological and environmental domains.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.,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. Unmet needs were not clearly explained in the remaining two articles.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.,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.

Design

Out of the total of nine studies, five were cross-sectional1818. 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.,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.,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.,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.,2626. Williams T, Dearden AM, Cameron IH. From pillar to post - a study of younger people with dementia. Psychiatr Bull. 2001;25:384-7. and three were longitudinal,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.,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.,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. with follow-up periods ranging from one year2121. 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.,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. to two years;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.and one study used qualitative analysis of interviews.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. Just one paper, studying a therapeutic gardening intervention, included a baseline and follow-up evaluation.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.

Sample

Four out of nine studies were conducted in the Netherlands,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.

19. 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.
-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.,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. three in the United Kingdom2121. 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.,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.,2626. Williams T, Dearden AM, Cameron IH. From pillar to post - a study of younger people with dementia. Psychiatr Bull. 2001;25:384-7. one in Norway2222. 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.and one in Colombia.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. Samples included both genders in all studies. Four studies used the sample from the same database as the NeedYD-study1818. 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.

19. 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.
-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.,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. although approaches and analysis of the data differed with different research questions.

Most of the papers, seven of them, included many different causes of dementia, such as AD, vascular dementia, frontotemporal dementia, mixed dementia, dementia with Lewy Bodies and dementia due to other causes.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.

19. 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.

20. 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.

21. 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.
-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.,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.,2626. Williams T, Dearden AM, Cameron IH. From pillar to post - a study of younger people with dementia. Psychiatr Bull. 2001;25:384-7.

One study included only one person with AD and his wife.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. Another study included three groups: middle-aged adult carriers and non-carriers of mutation E280A in the Presenilin 1 gene for Early Onset Familial AD and healthy elderly people.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. Two articles evaluated only people with YOD.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.,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.Four studies assessed people with YOD and their caregivers.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.,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.,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.,2626. Williams T, Dearden AM, Cameron IH. From pillar to post - a study of younger people with dementia. Psychiatr Bull. 2001;25:384-7. One study included only caregivers2222. 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. and another one assessed a group of descendants who were not primary caregivers.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. None of the studies were randomized.

Measurements

Quality of life was assessed using the Quality of Life-Alzheimer Disease scale (QoL-AD), which covers 13 domains: physical health, energy, mood, living situation, memory, family, marriage, friends, chores, fun, money, self, and life as a whole.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.,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. One study adopted the Dutch version of The RAND-36 Health Survey and used this scale in addition to the QoL-AD. This instrument consists of 36 questions to evaluate five mental and three physical domains: role limitations caused by emotional problems, social functioning, emotional well-being, vitality, general health perception, physical functioning, and role limitations caused by physical health problems and pain.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. The World Health Organization Quality of Life instrument-Abbreviated version (WHOQOL-Bref), used in one study has four domains: physical and psychological health, social relations and ambient.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.

The assessment instrument most frequently used to measure unmet needs was the Camberwell Assessment of Need for the Elderly (CANE), a semi-structured interview consisting of 24 domains that cover social, physical, psychological, and environmental needs of PwD, as well as psychological needs of the caregiver.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.

19. 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.
-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.,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. This instrument was used in all four Dutch studies.

Finally, one study adopted the Bradford Well-being Profile, based on observations taken by staff members, although well-being indicators were not reported in the article.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. One study did not have any specific instrument to assess QoL, well-being or (un)met needs, but used open interviews2424. 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. and another one did not specify the instruments used but mentioned the use of a health needs assessment, a postal survey and semi-structured interviews.2626. Williams T, Dearden AM, Cameron IH. From pillar to post - a study of younger people with dementia. Psychiatr Bull. 2001;25:384-7.

Findings

QoL

One study found that QoL was not influenced by carrying the mutation E280A in gene Presenilin 1 for early onset familial AD.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. The health-related QoL (HRQoL) of people with YOD was not associated with unmet needs, but was associated with depression.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. People with YOD self-reported significantly higher scores than the QoL-AD proxy scores assessed by caregivers.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. Carers rated their own HRQoL lower than the general population and unmet needs were related to several domains of caregiver HRQoL.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. Older age of the carer was associated with an increase in the total score of QoL and people with YOD having better disease awareness was associated with better QoL in their carers.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.

Unmet needs

Two studies suggested similar findings regarding people with YOD, since relationships were detected between unmet needs and daytime activities, lack of companionship, performing tasks that depend on eyesight or hearing and difficulties with memory in both studies,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.,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. but poor information, mobility and psychological distress were also associated with unmet needs in only one of these two studies.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.Other issues associated with unmet needs were prolonged time to diagnosis, lack of available health services, and strain of dedication to care versus the caregiver's own future perspective.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. One study suggested that there was no association between unmet needs and psychotropic drug use.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. People with YOD reported fewer unmet needs than did their caregivers, but both groups reported similar areas in which they perceived needs. The number of unmet needs in both cases decreased over time as dementia progressed.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.

Well-being

In one study, people with YOD described their distress at losing their abilities to read, write, converse and take part in everyday life.2626. Williams T, Dearden AM, Cameron IH. From pillar to post - a study of younger people with dementia. Psychiatr Bull. 2001;25:384-7. A therapeutic gardening program was associated with a renewed sense of purpose and increased well-being in people with YOD.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. One study found a relationship between the well-being of children whose parents had YOD and delayed diagnosis and the difficulty of dealing with confused behaviors in agile, physically well adults.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. Most of the carers reported their well-being as poor or very poor and their well-being was perceived as worse depending on the duration of caring.2626. Williams T, Dearden AM, Cameron IH. From pillar to post - a study of younger people with dementia. Psychiatr Bull. 2001;25:384-7.

Discussion

To the best of our knowledge, this is the first review that has systematically investigated factors associated with QoL and related concepts, such as well-being and unmet needs, in YOD. A primary concern is related to the unclear definitions of the concepts in the studies.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.,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.

21. 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.
-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.,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.,2626. Williams T, Dearden AM, Cameron IH. From pillar to post - a study of younger people with dementia. Psychiatr Bull. 2001;25:384-7. Especially with regard to YOD, there is a need to understand the effect of the disease on both people with dementia and on caregivers' functioning with regard to their phase in life, which may include specific aspects of QoL, well-being and unmet needs. The lack of clear definitions exposes the need for more research in the area, including in order to better delineate these concepts with respect to YOD.

The great majority of studies, with a single exception,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. were conducted in developed countries in Europe. Additionally, four of the European studies were conducted by the same research group and used the same database,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.

19. 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.
-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.,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. which can lead to cultural bias. It is necessary to increase the amount of information available and conduct research into YOD in different cultural backgrounds to better understand the particularities of the disease, including cultural contexts. For international validation of findings, other populations need to be studied.

Most of the papers included patients with different causes of dementia (i.e. Alzheimer's disease, Vascular Dementia, Frontotemporal Dementia, Lewy Body Dementia and Alcohol Related Dementia), indicating heterogeneous samples. The different etiologies have distinct symptoms and disease progression differs, possibly impacting the QoL of people with YOD and carers in varying ways. Only 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. who included dementia cases with different causes, compared QoL in carers of patients with Alzheimer's disease with non-Alzheimer's forms of dementia. In that study, people with Alzheimer's disease had been ill for shorter periods, had a more preserved consciousness of their condition and exhibited fewer behavioral disturbances than people with non-Alzheimer's disease. Family carers of people with Alzheimer's disease were less depressed than carers of those with dementia of other etiologies.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. The inclusion of heterogeneous dementia etiologies may negatively impact the consistency of the results for outcomes related to the QoL of people with YOD and their caregivers.

None of the studies included compared QoL in patients with YOD and LOD. We can assume that people with YOD have specific clinical and psychosocial symptoms and needs that may impact QoL differently. What differences might emerge in their QoL as a result? This is a knowledge gap in the field. Further studies should take into consideration the urgent need to better understand the differences between QoL in patients with YOD and LOD, in order that interventions can be developed that are properly designed to suit each of these two patient groups.

Evaluation instruments are another challenging area. Two studies reported that the inability of a large proportion of people with YOD to complete the assessment instruments was a limitation.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.,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. Disease progression is faster in YOD than in LOD, and the instruments used to assess QoL, well-being and unmet needs that are widely used for LOD patients may not be appropriate for patients with YOD and their caregivers. Future research should focus on developing specific instruments for YOD. The validity of self-reported QoL in dementia has been exhaustively studied in LOD. However, considering the particularities of YOD, it is necessary to expand studies of the perspective of people with YOD of their own QoL. 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. found that the HRQoL of people with YOD was not associated with unmet needs. However, their assessment was only based on caregivers' reports. The caregiver's perspective may not represent the needs of people with YOD.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. Six studies evaluated the QoL of people with YOD1818. 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.

19. 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.

20. 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.
-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.,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.,2626. Williams T, Dearden AM, Cameron IH. From pillar to post - a study of younger people with dementia. Psychiatr Bull. 2001;25:384-7. and four of them took into account self-reported HRQoL, well-being or unmet needs, rather than considering the opinion of the caregiver only.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.,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.,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.,2626. Williams T, Dearden AM, Cameron IH. From pillar to post - a study of younger people with dementia. Psychiatr Bull. 2001;25:384-7. The validity of self-reporting is a critical issue in assessment of QoL in dementia. Many studies demonstrate that dementia severity, neuropsychiatric symptoms, cognitive impairments, and awareness of disease may influence self-rated QoL in people with dementia.1515. Sousa MF, Santos RL, Arcoverde C, Simões P, Belfort T, Adler I, et al. Quality of life in dementia: the role of non-cognitive factors in the ratings of people with dementia and family caregivers. Int Psychogeriatr.2013;25:1097-105. It would be useful if studies of the QoL of people with YOD always took into consideration self-reported ratings, in order to clarify the differences between QoL assessments in LOD and YOD.

Attention must be brought to bear on how best to support people with YOD and their families. Delayed diagnoses and the use of support services in these families, professional's lack of knowledge about YOD and limited availability of services are closely related to higher levels of unmet psychological needs in caregivers.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. Specific services for people with YOD are uncommon in most countries,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. and this population is often cared for by services designed for older people.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.,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. Professionals may not be aware of the differences and people with YOD and their family members may not feel well-served in these institutions.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. When services were responsive to their individual needs, people with YOD exhibited fewer neuropsychiatric symptoms.2626. Williams T, Dearden AM, Cameron IH. From pillar to post - a study of younger people with dementia. Psychiatr Bull. 2001;25:384-7. This also enabled the caregiver to entrust others with the care of his relative and eventually led to an increase in well-being for both the person with dementia and the caregiver.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. This underlines the importance of early introduction of professional services in the caregiving trajectory in YOD.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.

Only one study evaluated a clinical intervention with people with YOD and its effectiveness with regard to QoL.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. Further studies should compare YOD and LOD in order to establish their differences and effectiveness in terms of QoL.

This review has a limitation. The variety of study aims and methodologies makes it difficult to pinpoint key issues. It would seem to be appropriate that future research should focus on using clear and replicable methodologies to enable more comprehensive analysis.

Future directions and conclusions

We systematically investigated the factors associated with QoL and related concepts in patients with YOD. The review process highlighted a number of issues related to the direction of future research. It is necessary to develop and increase research in other countries, and among populations with different cultural backgrounds. Consideration should be given to conducting investigations with more homogeneous samples and use of a clear concept of QoL. This would help to validate findings and improve understanding of the QoL of patients with YOD and of their carers. Finally, it is also important to examine the differences in QoL between patients with YOD and LOD and their carers.

Young onset dementia has attained greater visibility as the number of people affected increases and it becomes an important social and public health problem.22. Vieira RT, Caixeta L, Machado S, Silva AC, Nardi AE, Arias-Carrión O, et al. Epidemiology of early-onset dementia: a review of the literature. Clin Pract Epidemiol Ment Health. 2013;9:88-95.,44. Cruz BS. Levantamento epidemiológico de demência pré-senil no instituto de psiquiatria e centro de doenças de Alzheimer da UFRJ [monograph]. Rio de Janeiro: IPUB/UFRJ; 2002. 18 p. Especialização em Psiquiatria.,2727. Engelhardt E, Laks J, Dourado MCN, Mezzasalma MAU, Carvalho-Pinto M, Chalita-Gomes A, et al. Demência pré-senil: impacto psicossocial. Rev Bras Neurol. 2002;38:5-11. However, many countries lack specific plans, services and support strategies for YOD.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. Without specific knowledge about the disease and its possible impacts on the QoL of patients and their families, services tend to underestimate the need for medical care and other health professionals, leaving many of these people underserved.22. Vieira RT, Caixeta L, Machado S, Silva AC, Nardi AE, Arias-Carrión O, et al. Epidemiology of early-onset dementia: a review of the literature. Clin Pract Epidemiol Ment Health. 2013;9:88-95.,44. Cruz BS. Levantamento epidemiológico de demência pré-senil no instituto de psiquiatria e centro de doenças de Alzheimer da UFRJ [monograph]. Rio de Janeiro: IPUB/UFRJ; 2002. 18 p. Especialização em Psiquiatria.,1111. Moslow K. Early onset dementia: a national challenge, a future crisis. Washington: Alzheimer's Association; 2006.

References

  • 1
    Withall A, Draper B, Seeher K, Brodaty H. The prevalence and causes of younger onset dementia in Eastern Sydney, Australia. Int Psychogeriatr. 2014;26:1955-65.
  • 2
    Vieira RT, Caixeta L, Machado S, Silva AC, Nardi AE, Arias-Carrión O, et al. Epidemiology of early-onset dementia: a review of the literature. Clin Pract Epidemiol Ment Health. 2013;9:88-95.
  • 3
    Shankar N. Clinical profile of young-onset dementia: a study from Eastern India. Neurol Asia. 2008;13:103-8.
  • 4
    Cruz BS. Levantamento epidemiológico de demência pré-senil no instituto de psiquiatria e centro de doenças de Alzheimer da UFRJ [monograph]. Rio de Janeiro: IPUB/UFRJ; 2002. 18 p. Especialização em Psiquiatria.
  • 5
    Harvey RJ. Young onset dementia: epidemiology, clinical symptoms, family burden, support and outcome. London: Dementia Research Group; 1998.
  • 6
    Harvey RJ, Skelton-Robinson M, Rossor MN. The prevalence and causes of dementia in people under the age of 65 years. J Neurol Neurosurg Psychiatry. 2003;74:1206-9.
  • 7
    Jefferies K, Agrawal N. Early-onset dementia. Adv Psychiatr Treat. 2009;15:380-8.
  • 8
    Werner P, Stein-Shvachman I, Korczyn AD. Early onset dementia: clinical and social aspects. Int Psychogeriatr. 2009;21:631-6.
  • 9
    Svanberg E, Spector A, Stott J. The impact of young onset dementia on the family: a literature review. Int Psychogeriatr. 2011;23:356-71.
  • 10
    Koopmans R, Rosness T. Young onset dementia - what does the name imply? Int Psychogeriatr. 2014;26:1931-3.
  • 11
    Moslow K. Early onset dementia: a national challenge, a future crisis. Washington: Alzheimer's Association; 2006.
  • 12
    van Vliet D, de Vugt ME, Köhler S, Aalten P, Bakker C, Pijnenburg YA, et al. Awareness and its association with affective symptoms in young-onset and late-onset Alzheimer disease: a prospective study. Alzheimer Dis Assoc Disord. 2013;27:265-71.
  • 13
    Galinha IC, Ribeiro JLP. História e evolução do conceito de bem-estar subjectivo. Psic Saude & Doenças. 2005;6:203-14.
  • 14
    Lauriks S, Reinersmann A, Van der Roest HG, Meiland FJ, Davies RJ, Moelaert F, et al. Review of ICT-based services for identified unmet needs in people with dementia. Ageing Res Rev. 2007;6:223-46.
  • 15
    Sousa MF, Santos RL, Arcoverde C, Simões P, Belfort T, Adler I, et al. Quality of life in dementia: the role of non-cognitive factors in the ratings of people with dementia and family caregivers. Int Psychogeriatr.2013;25:1097-105.
  • 16
    Berwig M, Leicht H, Gertz HJ . Critical evaluation of self-rated quality of life in mild cognitive impairment and Alzheimer's disease-further evidence for the impact of anosognosia and global cognitive impairment. J Nutr Health Aging. 2009;13:226-30.
  • 17
    Moher D, Liberati A, Tetzlaff J, ltman DG; PRISMA Group. Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. Ann Intern Med. 2009;151:264-9, W64.
  • 18
    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.
  • 19
    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.
  • 20
    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.
  • 21
    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.
  • 22
    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.
  • 23
    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.
  • 24
    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.
  • 25
    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.
  • 26
    Williams T, Dearden AM, Cameron IH. From pillar to post - a study of younger people with dementia. Psychiatr Bull. 2001;25:384-7.
  • 27
    Engelhardt E, Laks J, Dourado MCN, Mezzasalma MAU, Carvalho-Pinto M, Chalita-Gomes A, et al. Demência pré-senil: impacto psicossocial. Rev Bras Neurol. 2002;38:5-11.
  • Financial support: Conselho Nacional de Desenvolvimento Científico e Tecnológico (CNPq).

Publication Dates

  • Publication in this collection
    Jan-Mar 2016

History

  • Received
    21 Aug 2015
  • Accepted
    28 Nov 2015
Associação de Psiquiatria do Rio Grande do Sul Av. Ipiranga, 5311/202, 90610-001 Porto Alegre RS/ Brasil, Tel./Fax: (55 51) 3024 4846 - Porto Alegre - RS - Brazil
E-mail: trends@aprs.org.br