Providing effective support to the increasing number of people with dementia to remain at home is a challenge for families, health professionals, service providers, and governments worldwide. The aim of this paper was to summarize and disseminate the current international research evidence on the met and unmet needs of people with dementia and their carers, to inform researchers and policy-makers.

A scoping review methodology was used to guide a search of studies published between 2004 and 2015 using specified search terms; 27 studies relevant to the aim were included. A constant comparison approach was used to thematically analyze the data.

Holistic needs encompassing basic human survival, medical, financial, and social needs were experienced by people with dementia and carers, regardless of country or methodology used to collect data. A gap was identified frequently between what was needed and the supports that were received; this gap encompassed quantity, quality, and flexibility of services underpinned by service delivery models.

The needs of people with dementia and their carers were diverse and not always effectively met by the services designed to support them. Recommendations are offered to service providers, policy-makers, and researchers to support more effective service provision tailored to meet the needs of people with dementia and their carers while they are living in the community.

The impact of dementia on relationships, intimacy, and sexuality has been documented in later life couples. However, little is known about the experiences of couples living with younger-onset dementia. The aim of this systematic review was to analyze the literature describing the impact of younger-onset dementia on relationships, intimacy, and sexuality in midlife couples.

A systematic literature search was conducted in July 2016 for relevant research papers. Five databases were searched: Web of Science, PsycINFO, MedLine, Scopus, and CINAHL. A quality appraisal checklist was used to assess the methodological quality of included studies.

Eleven studies were identified that explored relationships, intimacy, and sexuality from the perspective of the spouse, the person with dementia or both members of the dyad. Several themes were identified including shifts in roles and responsibilities, declines in relationship quality, changes in identity, and self-esteem, increasing social isolation and loneliness, shifts in intimacy, and changes in sexual activity.

Many of the reviewed studies were subject to a range of methodological issues including small sample sizes, small number of studies, and a reliance on the perspective of only one member of the dyad. Future research should follow couples longitudinally to gain a clearer picture of the impact of younger-onset dementia on the couple relationship over time. The inclusion of people living with younger-onset dementia in research will assist in developing a deeper understanding of the experiences of the individual and dyad.

This was a study of positive psychological traits in a group of rural Italians aged 90 to 101 years, and their children or other family members.

Mixed-methods quantitative (standardized rating scales) and qualitative (semi-structured interviews) study.

Study participants’ homes in nine villages in the Cilento region of southern Italy.

Twenty-nine nonagenarians and centenarians and 51 family members aged 51–75 years, selected by their general practitioners as a part of a larger study called CIAO (Cilento Initiative on Aging Outcomes).

We used published rating scales of mental and physical well-being, resilience, optimism, anxiety, depression, and perceived stress. Qualitative interviews gathered personal narratives of the oldest-old individuals, including migrations, traumatic events, and beliefs. Family members described their impressions about the personality traits of their older relative.

Participants age ≥90 years had worse physical health but better mental well-being than their younger family members. Mental well-being correlated negatively with levels of depression and anxiety in both the groups. The main themes that emerged from qualitative interviews included positivity (resilience and optimism), working hard, and bond with family and religion, as described in previously published studies of the oldest old, but also a need for control and love of the land, which appeared to be unique features of this rural population.

Exceptional longevity was characterized by a balance between acceptance of and grit to overcome adversities along with a positive attitude and close ties to family, religion, and land, providing purpose in life.

The aim of the present study was to investigate the psychometric characteristics of the Perceived Stress Scale (PSS) in a sample of dementia patients and their spousal caregivers.

We investigated the reliability and validity of the 14-item PSS in a sample of 80 couples, each including one spouse who had been diagnosed with mild to moderate dementia (mean age 75.55, SD = 5.85, 38.7% female) and one spousal caregiver (mean age 73.06, SD = 6.75, 61.3% female). We also examined the factor structure and sensitivity of the scale with regard to gender differences.

Exploratory factor analysis of the PSS revealed a two-factor solution for the scale; the first factor reflected general stress while the second factor consisted of items reflecting the perceived ability to cope with stressors. A confirmatory factor analysis verified that the data were a better fit for the two-factor model than a one-factor model. The two factors of the PSS showed good reliability for patients as well as for caregivers ranging between α = 0.73 and α = 0.82. Perceived stress was significantly positively correlated with depressive symptomatology in both caregivers and patients. Mean PSS scores did not significantly differ between male and female patients nor did they differ between male and female caregivers.

The present data indicate that the PSS provides a reliable and valid measure of perceived stress in dementia patients and their caregivers.

Since its development, the Qualidem has had items that were considered unsuited for people with very severe dementia. This study attempted to investigate the applicability of all Qualidem items in people with all stages of dementia severity.

Four data sets that contained Qualidem observations on people with dementia were combined. Dementia severity was categorized based on the Global Deterioration Scale (GDS), with a dichotomization of very severe dementia (GDS 7) and others (GDS 1–6). Unidimensional latent-trait models (Mokken scaling) were estimated to fit the Qualidem responses in the overall sample and the dichotomized groups. Scalability was assessed using coefficients of homogeneity (Loevinger's H), while reliability was assessed with Cronbach's α and ρ.

Combining the four databases resulted in 4,354 Qualidem measurements. The scalability of all scales was considered acceptable in the overall sample, as well is in the subgroups (all H > 0.3). Additionally, the reliability was good–excellent in the scales: “positive affect,” “positive self-image,” “care relationship,” and “negative affect.” Reliability was questionable–acceptable for “feeling at home,” “social relations,” “social isolation,” and “restless tense behavior.” Reliability was poor for “having something to do.”

Statistical considerations allow using all Qualidem items in all dementia stages. Future research should determine balance of statistical- versus conceptual-based reasoning in this academic debate.

Impulsive–aggressive behavior is a significant challenge in geriatric psychiatry and requires professional evaluation and management.

SOAS-R scales (Staff Observation Aggression Scale-Revision) completed by medical staff on three secure psychiatric wards were analyzed during a period of 12 months. Patients were subdivided into the following two diagnostic subgroups: dementia and other diagnoses.

A total of 146 aggressive incidents involving 66 patients were reported (8.8% of patients treated during this period, n = 752). Fifty-seven percent of the incidents involved patients with dementia. In 20% of the incidents, no precipitating event could be identified; this was more common in patients without dementia (p = 0.005). The medical condition of the patient was considered the trigger in 55% of the cases. Aggression was directed at nurses in 82% of the cases. Visible injury was reported in 12 cases, 3 of which required medical treatment. Male gender, the presence of previous aggressive incidents, and the evening shift (in the case of dementia patients) were identified as risk factors.

Aggression in dementia is often reactive and seems to be more predictable than if occurring with other diagnoses. Prevention measures such as de-escalations techniques, warning notes in the patient's file with previous aggressive behavior and stepping up for evening shifts are of crucial importance. As nurses were primarily affected, employer support programs, and mental health interventions are proposed to avoid long-term consequences.

A single-item depression measure may not be adequate in capturing the complex entity of mental health, despite wide use of this indicator in community studies. This study evaluated the accuracy of a single-question depression measure in comparison to two composite indices–the Center for Epidemiologic Studies Depression Scale (CESD) and the Geriatric Depression Scale (GDS).

A total of 800 elderly participants ranging from 60 to 89 years of age and residing in Seoul were recruited using a multistage sampling scheme in 2015. The survey was conducted by trained interviewers with a constructed questionnaire. Reliability and validity measures such as the Kappa index, sensitivity, specificity, PPV, NPV, and AUC were used to evaluate the accuracy of the single question measure. Socio-demographic group differences in accuracy were compared by age, sex, marital status, education, employment, and financial status.

The prevalence of depression by a single-question measure was much lower than those of CESD and GDS (5.5%, 12.3%, and 12.1%, respectively). The sensitivity of the single-item measure, based on CESD and GDS, was extremely low at 30.6% and 36.1%. In the subgroup analysis, however, there was a marked educational discrepancy in all accuracy measures; in sensitivity, people with a university degree or higher showed about 2.4 times higher sensitivity than those having only a primary school education.

The results show that a single-question depression measure should be used with caution. In addition, the single-question measure could substantially underestimate depression among the risk group of older adults.

Insomnia symptoms are common among old people, and hypnotics and sedative drugs are often prescribed in spite of small benefits. The aim of this study was to estimate the prevalence of insomnia symptoms and to analyze the association between insomnia symptoms, cognitive level, and prescription of hypnotics and sedatives among old people living in nursing homes.

The study comprised 2,135 people living in nursing homes in the county of Västerbotten, Sweden. Data concerning hypnotic and sedative drugs, cognitive function, and prevalence of insomnia symptoms were collected, using the Multi-Dimensional Dementia Assessment Scale (MDDAS).

The three most common insomnia symptoms were “sleeps for long periods during the day,” “interrupted night-time sleep,” and “wakes up early in the morning” with 57.8%, 56.4%, and 48.0%, respectively, of the residents exhibiting the symptoms at least once a week. Different insomnia symptoms showed different association patterns with sex and age. Most insomnia symptoms were more common among people with cognitive impairment compared to those with no cognitive impairment and seemed to reach their peak prevalence in people with moderate to severe cognitive impairment, subsequently decreasing with further cognitive decline. Of the study population, 24.0% were prescribed hypnotics and sedatives. Prescriptions were more common among those without cognitive impairment, and among those exhibiting the symptom “difficulty initiating sleep.”

Insomnia symptoms and prescription of hypnotics and sedatives are common among old people living in nursing homes. Considering the risk of adverse effects, it is important to regularly re-evaluate the need for these drugs.

There are some existing barriers posed by neuropsychological tests that interfere with the assessment of cognitive functioning by staff who work in long-term care facilities. The purpose of this study was to investigate the feasibility of assessing cognitive function through conversation.

A total of 100 care staff was randomly selected as participants. Each staff member evaluated cognitive function in one to three residents using the Conversational Assessment of Neurocognitive Dysfunction (CANDy), which is a screening test for dementia using conversation. Other scales used were the Mini-Mental State Examination (MMSE), Behavioral Pathology in Alzheimer’ s Disease (BEHAVE-AD), and quality-of-life questionnaire for the elderly with dementia (QOL-D).

A total of 80 care staff members and 158 residents were analyzed. When the CANDy involved an evaluation based on face-to-face communication, it demonstrated significant correlations with the MMSE, BEHAVE-AD, and several indices of the QOL-D (e.g. negative affect and actions, communication ability, restless, and spontaneity and activity). In contrast, when the CANDy involved an evaluation based on an impression of a typical conversation, it only demonstrated significant relationships with the MMSE and the spontaneity and activity index of the QOL-D.

Conversational assessment is a useful means to assess cognitive functioning and to promote interactions between residents and care staff in long-term care facilities.

The Behavioral Health Laboratory (BHL), a telephone-based mental health assessment, is a cost-effective approach that can improve mental illness identification and management. The individual BHL instruments, which were originally designed to be administered in-person, have not yet been validated with an in-person BHL assessment. This study therefore aims to characterize the concordance between the BHL data gathered by telephone and in-person interviews.

A cross-sectional study was conducted with English-speaking aging services network (ASN) clients aged 60 years and older in Monroe County, NY who were randomized to a BHL interview either in-person (n = 55) or by telephone (n = 53).

There was strong evidence of equivalence between telephone and in-person interviews for depressive disorders, generalized anxiety, panic disorder, drug misuse, psychosis, PTSD, mental illness symptom severity, and five of the six questions assessing suicidality. There was marginal equivalence in PHQ-9 total scores and one of the six questions assessing suicidal ideation, and no evidence of equivalence between interview modalities for assessing cognitive impairment.

With a few exceptions, the BHL gathered nearly equivalent information via telephone as compared to in-person interviews. This suggests that the BHL may be a cost-effective approach appropriate for dissemination in a wide variety of settings including the ASN. Dissemination of the BHL has the potential to strengthen the linkages between primary care, mental healthcare, and social service providers and improve identification and management of those with late-life mental illness.

Neuropsychiatric symptoms (NPS), such as depression, apathy, agitation, and psychotic symptoms are common in mild cognitive impairment (MCI) and dementia in Alzheimer's disease (AD). Subgroups of NPS have been reported. Yet the relationship of NPS and their subgroups to different stages of cognitive impairment is unclear. Most previous studies are based on small sample sizes and show conflicting results. We sought to examine the frequency of NPS and their subgroups in MCI and different stages of dementia in AD.

This was a cross-sectional study using data from a Norwegian national registry of memory clinics. From a total sample of 4,571 patients, we included those with MCI or AD (MCI 817, mild AD 883, moderate–severe AD 441). To compare variables across groups ANOVA or χ2-test was applied. We used factor analysis of Neuropsychiatric Inventory Questionnaire (NPI-Q) items to identify subgroups of NPS.

The frequency of any NPS was 87.2% (AD 91.2%, MCI 79.5%; p < 0.001) and increased with increasing severity of cognitive decline. The most frequent NPS in MCI was depression. Apathy was the most frequent NPS in AD across different stages of severity. The factor analysis identified three subgroups in MCI and mild AD, and a fourth one in moderate–severe AD. We labelled the subgroups “depression,” “agitation,” “psychosis,” and “elation.”

The frequency of NPS is high in MCI and AD and increases with the severity of cognitive decline. The subgroups of NPS were relatively consistent from MCI to moderate-severe AD. The subgroup elation appeared only in moderate-severe AD.

Physical frailty and depression are common comorbid conditions that have important impact on older adults. Few studies however have examined their co-occurrence in centenarians. This paper explores the relationship between the two conditions and the most characteristic depressive symptoms associated with the frailty syndrome.

Data come from two Portuguese Centenarian Studies. Frailty was measured using Fried's phenotype, which includes at least three clinical signs: exhaustion, weight loss, weakness, slowness, and low physical activity level; the Geriatric Depression Scale was used to assess depression. Descriptive comparison and binary logistic regression models were used for data analysis.

The final sample comprised 91 centenarians (mean age = 101.0, SD = 1.3; 85.7% female). From these, 5.5% were classified as robust, 42.9% as pre-frail, and 51.6% as frail. The prevalence of depression in the whole sample was 35.2% (51.1% in frail centenarians; 21.1% in pre-frail centenarians; 0% in robust centenarians). Frail centenarians presented higher risk of depression (OR = 3.92; 95% CI 1.48–10.4) when compared to pre-frail centenarians. Findings from the multivariable model (gender, living arrangements, education, cognition, subjective health, current illness, and functionality) revealed that only subjective health remained significant.

It seems that depression is a comorbid clinical independent condition that is frequent in frail and pre-frail centenarians.

Memory strategies help seniors remember information that is essential for the performance of their daily activities and contribute to their independence in the context of declining memory skills. This study aimed to analyze the categories, the diversity, and relevance of memory strategies known by seniors, and to identify individual characteristics that correlated with these variables.

The sample consisted of 294 participants aged 60 and over who decided to take part in a cognitive vitality promotion program. An adapted version of the memory situation questionnaire (Troyer, 2001) was administered to identify the memory strategies that seniors would use in five daily life situations. A scoring grid, also adapted from the questionnaire's original version (Troyer, 2001), was used to quantify the relevance of the strategies that were reported by participants.

All participants mentioned at least once that they would use a strategy from the physical category of memory strategies. Out of a possible range of 26 strategies, participants answered an average of 6.14 (SD = 1.7) different answers across the five situations. Based on expert consensus, 67.7% of the mentioned memory strategies were relevant. Diversity and relevance were significantly higher when trying to remember appointments, things to bring or phone numbers (p ≤ 0.05). The level of education, cognitive skills, and participation in leisure activities were related to diversity and relevance of reported strategies.

Seniors know various and relevant memory strategies to perform daily activities. The advantages of integrating strategies that they already know in cognitive health promotion programs should be considered in further studies.

Despite recent interest in community-based screening programs to detect undiagnosed cognitive disorder, little is known about whether screening leads to further diagnostic evaluation, or the effects of such programs in terms of actual changes in patient or caregiver behavior. This study followed up informants of older adults (i.e. caregivers of patients who completed informant-based screening regarding the patient) following participation in a study screening for undiagnosed memory problems, to explore uptake of further diagnostic evaluation or treatment, advance planning or preparations, lifestyle changes, medication adherence, and use of support services.

A total of 140 informants of older adult patients were surveyed four to fifteen months following participation in a cognitive screening study. The informants were interviewed with a study-specific survey about cognitive assessment, advance planning, lifestyle changes, and use of support services and general medication adherence.

A minority of patients and informants had engaged in advance planning or made relevant lifestyle changes following cognitive screening. Those assessed as being at higher risk of memory problems were more likely to have attended a full diagnostic evaluation, engaged in support services and experienced medication adherence difficulties.

Only a small proportion of patients participating in cognitive screening subsequently engaged in diagnostic evaluation, advance planning, or lifestyle changes. However, those with higher risk of cognitive impairment were generally more likely to take some action following cognitive screening. Those at higher risk were also more vulnerable due to greater difficulties with medication adherence.