There are few studies of young persons (<65 years old) with dementia, and the situation of their children has been a neglected research field. The aim is explore how adult children of a parent with young-onset dementia have experienced the development of their parents’ dementia and what needs they have for assistance.

Qualitative interviews with 14 informants (aged 20–37 years; 12 daughters, 2 sons) during 2011 were conducted and analyzed thematically.

The informants experienced great burdens and felt neglected during the development of their parents’ dementia, both by their family and by health and social services. They emphasized a need to be seen as individuals, with their experiences, feelings, and personal needs for assistance. The stresses experienced during the development of parental dementia seemed to increase conflicts in the family. There were variations in reactions between children, depending on age, gender, family structure and relationships, responsibilities, personal relations with both parents, and whether there was an adult primary caregiver. The length of time living together with the parent with dementia seemed to increase the stress and burden to the children. They expressed a great need for information and support.

The findings strengthen the notion of the need for family-oriented support, combined with person-centered care for the children according to their needs. In addition, group meetings and contact with other young people in the same stage of life could be of interest for some.

Young onset Alzheimer's disease (YOAD; onset before 65 years of age) is thought to have a more rapid course and increased rate of progression compared to late onset Alzheimer's disease (LOAD). This assumption appears partly due to important clinical, structural, neuropathological, and neurochemical differences suggesting YOAD is a separate entity to LOAD. The aim in this review was to systematically identify and examine appropriate studies comparing rate of cognitive decline between patients with YOAD and patients with LOAD.

A computer-based literature search was initially undertaken, followed by citation tracking and search of related papers. Primary research studies specifically focused on the rate of cognitive decline between people with YOAD and LOAD were included. Studies were described, critically analyzed, presented, and discussed in the review.

Four studies were included, of which three were longitudinal and one was a case-control study. Three of the included studies found a faster rate of decline in patients with YOAD, and one found no difference in rate of decline between the two groups.

The findings of the review are mixed and conflicting, and limited by the heterogeneity of the included studies. There is a need for future research to design systematic studies that include sufficient sample sizes and follow-up periods, and control for possible confounding factors such as education level, baseline cognitive impairment, and vascular risk factors. This will help to validate the findings so far and improve our understanding of the rate of cognitive decline in people with YOAD and LOAD.

Service planning for people with younger onset dementia (YOD; an onset of symptoms before the age of 65 years) relies on prevalence estimates, with existing models based upon older people. This pilot study investigated the prevalence and causes of YOD in a defined catchment area of Eastern Sydney, Australia.

The study was conducted in three stages: publicity building, case finding, and case validation. A brief structured questionnaire was sent to health professionals in the catchment area asking how many patients with YOD they had seen over the previous 12 months. Memory clinics and hospital records were also searched for YOD patients. Clinicians assigned a Statistical Linkage Key to each patient to prevent double counting, and indicated the cause of dementia. The majority of patients were validated by a review of medical case notes. Prevalence data were calculated for the following age groups: 30–64, 30–44, and 45–64 years.

Two hundred and four potential patients were identified, of which 141 met inclusion criteria. The primary clinical subtypes were alcohol-related dementia (18.4%), Alzheimer's disease (17.7%), vascular dementia (12.8%), and frontotemporal dementia (11.3%). Eighty-eight patients were aged 30 to 64 years on census date and were therefore included in the prevalence calculations. The overall prevalence was 68.2 per 100,000 population at risk for the 30–64-year age group (95% Confidence Interval (CI): 54.9–83.4); 11.6 per 100,000 for the 30–44-year age group (95% CI: 5.3–21.7); and 132.9 per 100,000 for the 45–64 age group (95% CI: 105.8–164.2).

Younger onset dementia affects a significant number of people in Eastern Sydney with a diverse range of clinical types. This prevalence rate is higher than previous reports from the United Kingdom and Japan, with a different distribution of etiologies, which have important implications for service planning for this group.

Previous studies in western countries have shown that about 30%–50% of patients with frontotemporal lobar degeneration (FTLD) have a positive family history, whereas the few epidemiological studies on FTLD done in Asia reported much lower frequencies. It is not clear the reason why the frequencies of FTLD with positive family history were lower in Asia. Furthermore, these findings were not from studies focused on family history. Therefore, it is necessary to conduct further studies on the family history of FTLD in Asia. This international multi-center research aims to investigate the family histories in patients with FTLD and related neurodegenerative diseases such as progressive supranuclear palsy (PSP), corticobasal syndrome (CBS), and motor neuron diseases in a larger Asian cohort.

Participants were collected from five countries: India, Indonesia, Japan, Taiwan, and Philippines. All patients were diagnosed with behavioral variant frontotemporal dementia (bvFTD), semantic dementia (SD), progressive non-fluent aphasia (PA), frontotemporal dementia with motor neuron disease (FTD/MND), PSP, and corticobasal degeneration (CBD) according to international consensus criteria. Family histories of FTLD and related neurodegenerative diseases were investigated in each patient.

Ninety-one patients were included in this study. Forty-two patients were diagnosed to have bvFTD, two patients had FTD/MND, 22 had SD, 15 had PA, one had PA/CBS, five had CBS and four patients had PSP. Family history of any FTLD spectrum disorder was reported in 9.5% in bvFTD patients but in none of the SD or PA.

In contrast to patients of the western countries, few Asian FTLD patients have positive family histories of dementia.

People with Young Onset Dementia (YOD) have specific needs for care. These people eventually require institutional care, usually delivered by institutions designed for the elderly. The Dutch network of care organizations delivering specialized YOD care offers a unique opportunity to obtain more knowledge of this special population.

Our cross-sectional study collected data from 230 people with YOD in eight care homes providing YOD specialized care. Data collected: demographic data, disease duration, dementia subtype, comorbidity, dementia severity (Global Deterioration Scale – GDS), neuropsychiatric symptoms (NPS; Neuropsychiatric Inventory – NPI, Cohen Mansfield Agitation Inventory – CMAI), disease awareness (Guidelines for the Rating of Awareness Deficits – GRAD), need for assistance (hierarchic Activities of Daily Living (ADL) scale – Resident Assessment Instrument – Minimum Data Set (RAI-MDS)).

The mean age of the residents with YOD in care homes was 60 years and 53% of them were men. There is a large variety of etiologic diagnoses underlying the dementia. Dementia severity was very mild to mild in 18%, moderate in 25%, and severe or very severe in 58% of the participants. The prevalence of NPS was high with 90% exhibiting one or more clinically relevant NPS. Comorbidity was present in more than three quarters of the participants, most frequently psychiatric disorders.

The institutionalized YOD population is heterogeneous. NPS occur in almost all institutionalized people with YOD, and frequency and severity of NPS are higher than in late onset dementia (LOD) and community-dwelling YOD patients. Care should be delivered in settings accommodating a mixed male and female population, with appropriate, meaningful activities for all individuals. Further research is needed on NPS in YOD, to enhance quality of life and work in specialized YOD-care.

Young-onset dementia (YOD) is defined as dementia that develops before the age of 65 years. The prevalence and type of neuropsychiatric symptoms (NPS) in YOD differ from patients with late onset dementia. NPS in dementia patients are often treated with psychotropic drugs. The aim of this study was to investigate psychotropic drug use (PDU) in Dutch community-dwelling YOD patients and the association between age, gender, dementia etiology and severity, symptoms of depression, disease awareness, unmet needs, and type of NPS.

Psychotropic drug use in 196 YOD patients was registered. Drugs were categorized according to the Anatomical Therapeutical Chemical classification. The association between age, gender, dementia type, dementia stage, type of NPS, depressive symptoms, disease awareness, and amount of unmet needs on total PDU was analyzed using binomial logistic regression analysis.

Fifty-two percent of the patients were prescribed at least one psychotropic drug; 36.2% of patients used one drug, and 12.2% used two different drugs. Antidepressants (36.2%) and antipsychotic drugs (17.3%) were the most frequently prescribed psychotropic drugs. Anti-dementia drugs were prescribed in 51.5% of the patients. Increasing age and moderate to severe depressive symptoms were positively associated with the total use of psychotropic drugs.

Community-dwelling YOD patients have a high prevalence of PDU. More research is needed to study the association between unmet needs, NPS, and PDU, and psychosocial interventions have to be developed to limit the use of psychotropic drugs in YOD.

Little is known about care needs in young-onset dementia (YOD) patients, even though this information is essential for service provision and future care planning.

We explored: (1) care needs of people with YOD, (2) the level of agreement within patient-caregiver dyads on care needs, and (3) the longitudinal relationship between unmet needs and neuropsychiatric symptoms.

A community-based prospective study of 215 YOD patients-caregiver dyads. Care needs were assessed with the Camberwell Assessment of Need for the Elderly. The level of agreement between patient and caregivers’ report on care needs was calculated using κ coefficients. The relationship between unmet needs and neuropsychiatric symptoms over time, assessed with the Neuropsychiatric Inventory, was explored using linear mixed models.

Patients and caregivers generally agreed on the areas in which needs occurred. Only modest agreement existed within patient-caregiver dyads regarding whether needs could be met. Patients experienced high levels of unmet needs in areas such as daytime activities, social company, intimate relationships, and information, leading to an increase in neuropsychiatric symptoms.

Our findings indicate that in YOD, there are specific areas of life in which unmet needs are more likely to occur. The high proportions of unmet needs and their relationship with neuropsychiatric symptoms warrant interventions that target neuropsychiatric symptoms as well as the prevention of unmet needs. This underlines the importance of the periodic investigation of care needs, in which patient and caregiver perspectives are considered complementary.

Children of patients with young onset dementia (YOD) who are confronted with a parent who has a progressive disease, often assist in caregiving tasks, which may have a great impact on their lives. The objective of the present study is to explore the experiences of children living with a young parent with dementia with a specific focus on the children's needs.

Semi-structured interviews with 14 adolescent children between the ages of 15 and 27 years of patients with YOD were analyzed using inductive content analysis. Themes were identified based on the established codes.

The emerging categories were divided into three themes that demonstrated the impact of dementia on daily life, different ways of coping with the disease, and children's need for care and support. The children had difficulties managing all of the responsibilities and showed concerns about their future. To deal with these problems, they demonstrated various coping styles, such as avoidant or adaptive coping. Although most children were initially reluctant to seek professional care, several of them expressed the need for practical guidance to address the changing behavior of their parent. The children felt more comfortable talking to someone who was familiar with their situation and who had specific knowledge of YOD and the available services.

In addition to practical information, more accessible and specific information about the diagnosis and the course of YOD is needed to provide a better understanding of the disease for the children. These findings underline the need for a personal, family-centered approach.

This study was a part of a larger study exploring the impact of assistive technology on the lives of young people living with dementia (YPD). This paper focuses on one of the most useful devices, the simple remote control (SRC). The objective was to explore the reason why the SRC is significant and beneficial in the everyday lives of YPD and their caregivers.

This qualitative longitudinal study had a participatory design. Eight participants received an SRC. The range for using it was 0–15 months. In-depth interviews and observations were conducted at baseline and repeated every third month up to 18 months. A situated learning approach was used in the analysis to provide a deeper understanding of the significance and use of SRC.

Young people having dementia spend a substantial amount of time alone. Watching television was reported to be important, but handling remote controls was challenging and created a variety of problems. YPD learned to use SRC, which made important differences in the everyday lives of all family members. Comprehensive support from caregivers and professionals was important for YPD in the learning process.

The SRC was deemed a success because it solved challenges regarding the use of television in everyday lives of families. The design was recognizable and user-friendly, thus allowing YPD to learn its operation. Access to professional support and advice regarding assistive technology is vital for establishing a system for follow-up and continued collaboration to make future adaptations and adjustments.

Memory impairment in geriatric depression is understudied, but may identify individuals at risk for development of dementia and Alzheimer's disease (AD). Using a neuropsychologically based definition of amnestic mild cognitive impairment (aMCI) in patients with geriatric depression, we hypothesized that patients with aMCI, compared with those without it, would have increased incidence of both dementia and AD.

Participants were aged 60 years and older and consisted of depressed participants and non-depressed volunteer controls. The depressed cohort met criteria for unipolar major depression. All participants were free of dementia and other neurological illness at baseline. At study entry, participants were administered a standardized clinical interview, a battery of neurocognitive tests, and provided a blood sample for determination of apolipoprotein E genotype. A cognitive diagnosis was assigned by a panel of experts who convened annually and reviewed available clinical, neuropsychological and laboratory data to achieve a consensus cognitive diagnosis to determine a consensus diagnosis. Survival analysis examined the association between aMCI and later dementia (all-cause) and AD.

Among 295 depressed individuals, 63 (21.36%) met criteria for aMCI. Among 161 non-depressed controls, four (2.48%) met aMCI criteria. Participants were followed for 6.28 years on average. Forty-three individuals developed dementia, including 40 (13.6%) depressed and three (1.9%) control participants. Both aMCI and age were associated with incident dementia and AD.

The presence of aMCI is a poor prognostic sign among patients with geriatric depression. Clinicians should carefully screen elderly depressed adults for memory impairment.

We reviewed the literature on family therapy and dementia to investigate the following: what is known about the use of family therapy in the context of living with dementia; what are the challenges of working in this context; and what guidelines/models are available to guide family therapists working with families living with dementia.

We searched English language literature from 1992 onwards, classified the resulting papers into broad categories of theoretical, expository, or research (descriptive, quantitative, or qualitative), and conducted a narrative review to draw learning points from the identified papers.

In total 31 papers were identified: five theoretical, 11 expository; and 15 research papers. Several papers described methodologies; psychotherapeutic interventions applied to family members; or complex intervention packages in which the role of family therapy could not be separately identified, rather than family therapy. A range of outcomes were investigated, often involving the caregiver. Several authors suggest areas in dementia care where family therapy is likely to be beneficial.

Although the literature on family therapy and dementia has grown over the past 25 years and suggests potentially useful roles for therapy, a number of challenges exist in terms of context, family, and therapy itself. There is a need for further research, particularly into the following fields: How to evaluate the success of therapy; how to ensure treatment integrity; how to make techniques from family therapy available more widely; and how to train the health and social care workforce in working with families.

Dementia and Alzheimer's disease (AD) is considered a major public health challenge in this decade and in the future. Early detection of AD through appropriate screening tools would be valuable approach in facing the burden of disease specifically in developing societies with insufficient resources. Selecting a screening tool which is non-expensive, non-invasive and implementable by trained primary healthcare providers is the first and probably the most important step in detecting high risk individuals. The goal of this review is to address the key issues in assessment tools in developing countries with a high level of illiteracy.

We set about a review on literature on the subject of cognitive function assessment among minorities, people with low or no education, and people who live in underdeveloped societies. We also reviewed the studies on validation of such tests in a new society.

The most popular assessment tools are more or less biased by the level of education; not all of them are useful for any type of dementia as they assess only some domains of cognitive function.

Even though people with lower level of education have a higher rate of developing dementia, cognitive function cannot be accurately assessed because of limitations of current available tools. It is strongly suggested that special attention be paid to assess them by functional scales and activity daily living scales. For a more efficient assessment, cognitive tests can also benefit from illustrative questions, proverbs, metaphors, traditions, religious rituals and historical events.

Health is an important aspect of individuals’ lives as they age. The aim of this study was to examine the relationship of sociodemographic factors, diagnosed chronic health conditions, and current depression with attitudes to aging in midlife.

A cross-sectional baseline analysis was conducted on the first 300 participants from the Canterbury Health, Ageing and Life Course study in New Zealand, a stratified randomized community longitudinal study of adults recruited between 49 and 51 years. Attitudes were measured using the Attitudes to Aging Questionnaire (AAQ) and analyzed with a range of prevalent diagnosed chronic conditions, current depression, and sociodemographic variables.

Individuals perceived their physical aging more negatively after a diagnosis of hypertension, arthritis or asthma. Diagnosed lifetime depression and anxiety, and current depression, showed strong relationships with attitudes to aging across domains. After controlling for sociodemographic factors and current depression, individuals with diagnosed hypertension, arthritis, asthma, lifetime depression or anxiety continued to report significantly more negative attitudes to aging. Current depression showed the strongest associations with attitudes to aging and mediated relationships of health on attitudes to aging.

Physical and mental health are related to attitudes to aging. Most chronic conditions examined are significantly associated with attitudes toward aging in the physical change domain. Diagnosed lifetime depression and anxiety, and current depression, are negatively related across attitudinal domains. Individuals can feel positive about aging while experiencing poorer health, but this is more difficult in the presence of low mood.

Korsakoff's syndrome (KS) is a neuropsychiatric disorder characterized by severe amnesia. Quality of life (QoL) is becoming an increasingly used outcome measure in clinical practice but little is known about QoL in KS and how it may change over time. The purpose of this study was therefore to assess the QoL in patients with KS at baseline and with a 20-month follow-up.

The current study is a longitudinal study on the QoL in patients with KS living in two long-term care facilities for KS patients in the Netherlands. QoL was scored with the proxy-based QUALIDEM scale with a 20-month follow-up.

Of the 72 KS patients included at baseline, 57 KS patients had a follow-up QoL score (79.2%). On the subscales “Feeling at home,” “Positive affect,” and “Care relationship” of the QUALIDEM, there was a better QoL in the follow-up, although effects were relatively small. Other subscales indicated a stable QoL over time. There were inter-relations between changes in subscales.

The main finding of this study is that patients with KS on average do show a relatively stable moderate to good QoL despite the severity of the syndrome. On specific subscales, there is a small increase in QoL over time. Results do suggest that prolonged stay in a long-term care facility for KS patients does have a neutral to a positive effect on QoL in KS.

Aspects of eudaimonic well-being, such as personal growth (PG) and purpose in life (PL), have been highlighted as important to older adults’ health. We investigated the relationship of PG and PL with patterns of survival to the age of 85 years and older.

The sample included 8,880 women from the Women's Health Initiative cohort who reached 85 years of age by December 1, 2013, and for whom data on the PG and PL constructs were available. Women were classified into mutually exclusive outcomes: Healthy, Prevalent, Incident, Disabled, and Deceased. PG and PL were each assessed using a modified seven-item measure derived from the Psychological Well-Being scale.

Women were most commonly classified as Healthy (38.2%, n = 3,395), followed by Incident (24.4%, n = 2,163), Disabled (19.0%, n = 1,685), Prevalent (14.3%, 1,273), and Deceased (4.1%, n = 364). Women with low PL and PG levels were more likely to have prevalent mobility disability and disease or incident death before the age of 85 years. Specifically, those who reported low levels of PG and PL had a 2.1- and 3.6-fold higher risk, respectively, of death.

These findings indicate that even among the oldest old, experience of purposeful life engagement and continuing PG may contribute to better health outcomes.

There are no studies that have identified the ability to recognize and manage delirium among Italian health providers caring for patients at risk. Therefore, the Italian Association of Psychogeriatrics (AIP) conducted a multicenter survey among doctors, nurses, psychologists and physiotherapists to assess their competence regarding the theme of delirium and its management in the everyday clinical practice.

The survey period was 1st June 2013 to 30th November 2013. The invitation to participate was sent via email, with publication on the AIP website. The survey included 14 questions and two case vignettes.

A total of 648/1,500 responses were collected. Most responders were doctors (n = 322/800), followed by nurses (n = 225/500), psychologists (n = 51/100), and physiotherapists (n = 30/100). Generally, doctors and psychologists correctly defined delirium, while nurses and physiotherapists did not. The most frequently used diagnostic tools were the Confusion Assessment Method (CAM) and the Diagnostic and Statistical Manual of Mental Disorders-IV. Delirium intensity was rarely assessed. Hypoactive delirium was generally managed with non-pharmacological approaches, while hyperactive delirium with a combination of non-pharmacological and pharmacological approaches. However, possible causes of delirium were under-assessed by half of doctors and by the majority of other professionals. Nurses, psychologists and physiotherapists did not answer the case vignettes, while doctors identified the correct answer in most cases.

This is the first Italian survey among health providers caring for patients at risk of delirium. This is also the first survey including doctors, nurses, psychologists and physiotherapists. The results emphasize the importance of training to improve knowledge of this relevant unmet medical need.