We aimed to understand the facilitators to developing and sustaining high-quality services for people with young onset dementia (YOD) and their families/supporters.

This qualitative study used semi-structured interviews with commissioners and service managers, analyzed using inductive thematic analysis.

A purposive sample of providers was selected from diverse areas and contrasting YOD services.

Eighteen senior staff from YOD services and two dementia service commissioners took part.

For commissioners, key interview topics were experiences of commissioning YOD services, perceived facilitators or barriers, and how future guidance should be structured for ease of use. For service providers, key topics explored experiences of delivering YOD services; what was achievable or challenging; how the service was funded; how it linked with broader provision for YOD in the area; and how guidance should be structured.

Recorded interviews lasted 30–40 minutes. Seven key facilitators to the development and sustaining of YOD services were identified: having knowledgeable, committed local champions; involvement of people living with YOD and family supporters; initial delivery within existing resources; partnership working within and between sectors; having a reflective, supportive organizational culture; gathering evidence of impact; and having wider support and guidance.

Improvements in provision for those with YOD and their families need to be built on understanding of service-level and interpersonal influences as well as on understanding of YOD itself. Our findings highlight a set of facilitators which need to be in place to establish and sustain high-quality YOD services that fit the local context.

Behaviours associated with agitation are common in people living with dementia. The Cohen-Mansfield Agitation Inventory (CMAI) is a 29-item scale widely used to assess agitation completed by a proxy (family carer or staff member). However, proxy informants introduce possible reporting bias when blinding to the treatment arm is not possible, and potential accuracy issues due to irregular contact between the proxy and the person with dementia over the reporting period. An observational measure completed by a blinded researcher may address these issues, but no agitation measures with comparable items exist.

Development and validation of an observational version of the CMAI (CMAI-O), to assess its validity as an alternative or complementary measure of agitation.

Fifty care homes in England.

Residents (N = 726) with dementia.

Two observational measures (CMAI-O and PAS) were completed by an independent researcher. Measures of agitation, functional status, and neuropsychiatric symptoms were completed with staff proxies.

The CMAI-O showed adequate internal consistency (α = .61), criterion validity with the PAS (r = .79, p = < .001), incremental validity in predicting quality of life beyond the Functional Assessment Staging of Alzheimer’s disease (β = 1.83, p < .001 at baseline) and discriminant validity from the Neuropsychiatric Inventory Apathy subscale (r = .004, p = .902).

The CMAI-O is a promising research tool for independently measuring agitation in people with dementia in care homes. Its use alongside the CMAI could provide a more robust understanding of agitation amongst residents with dementia.

We explored the influence of study partner (SP) characteristics on SP-reported neuropsychiatric symptoms (NPS) presence across the neurocognitive spectrum and on the prognostic utility of mild behavioral impairment (MBI).

We performed cross-sectional (n = 26,748) and longitudinal (n = 12,794) analyses using participant-SP dyad data from the National Alzheimer’s Coordinating Center. Participants were cognitively normal (CN; n = 11,951) or had mild cognitive impairment (MCI; n = 5686) or dementia (n = 9111).

SPs rated NPS using the Neuropsychiatric Inventory Questionnaire. We used multivariable logistic regression to model the association between SP characteristics (age, sex, and relationship to participant [spouse, child, and other]) and NPS status (outcome). Cox regressions assessed SP characteristics as moderators of MBI associations with incident dementia or as predictors of incident dementia in MBI + participants only.

Among CN persons, younger, female, and spouse SPs reported NPS more frequently. In MCI, younger SPs and those who were spouses or children of participants reported higher NPS odds. For dementia participants, NPS odds were higher in female and spouse SPs. MBI associations with incident dementia were slightly weaker when SPs were older but did not depend on SP sex or relationship to participant. Among MBI + participants with spouse or child SPs, hazard for dementia was higher when compared to MBI + participants with other SPs.

SP age, sex, and relationship to participant influence NPS reporting across the neurocognitive spectrum, with potential implications for MBI prognosis. Considering SP characteristics may enhance the accuracy of NPS assessments, which may facilitate therapy planning and prognosis.

In older patients with mental and physical multimorbidity (MPM), personality assessment is highly complex. Our aim was to examine personality traits in this population using the Hetero-Anamnestic Personality questionnaire (HAP), and to compare the premorbid perspective of patients’ relatives (HAP) with the present-time perspective of nursing staff (HAP-t).

Cross-sectional.

Dutch gerontopsychiatric nursing home (GP-NH) units.

Totally, 142 GP-NH residents with MPM (excluding dementia).

NH norm data of the HAP were used to identify clinically relevant premorbid traits. Linear mixed models estimated the differences between HAP and HAP-t trait scores (0–10). Agreement was quantified by intraclass correlation coefficients (ICCs). All HAP-HAP-t analyses were corrected for response tendency (RT) scores (−10–10).

78.4% of the patients had at least one premorbid maladaptive trait, and 62.2% had two or more. Most prevalent were: “disorderly” (30.3%), “unpredictable/impulsive” (29.1%) and “vulnerable” (27.3%) behavior. The RT of relatives appeared significantly more positive than that of nursing staff (+1.8, 95% CI 0.6–2.9, p = 0.002). After RT correction, the traits “vulnerable”, “perfectionist” and “unpredictable/impulsive” behavior scored higher on the HAP than HAP-t (respectively +1.2, 95% CI 0.6–1.7, p < 0.001; +2.1, 95% CI 1.3–2.8, p < 0.001; +0.6, 95% CI 0.1–1.1, p = 0.013), while “rigid” behavior scored lower (−0.7, 95% CI −1.3 to −0.03, p = 0.042). Adjusted ICCs ranged from 0.15 to 0.58.

Our study shows high percentages of premorbid maladaptive personality traits, which calls for attention on personality assessment in MPM NH residents. Results also indicate that the HAP and HAP-t questionnaires should not be used interchangeably for this patient group in clinical practice.