Deirdre Johnston

Identification of community-residing individuals with dementia and their unmet needs for care

Innovative approaches to the widespread delivery of evidence‐based dementia care are needed. The aims of this study were to determine whether a telephone screening method could efficiently identify individuals in the community in need of care for dementia and to develop a multidimensional needs assessment tool for identifying the type and frequency of unmet needs related to memory disorders in the home setting.

A Descriptive Study of Home Modifications for People with Dementia and Barriers to Implementation.

This study describes home environmental features, safety issues, and health-related modifications in a community dwelling sample of 82 elderly people with dementia. Main barriers to the accessibility of the homes were steps both inside and outside the home. The majority of the caregivers had made home modifications that pertained mainly to physical limitations. Home modifications to support cognitive deficits were made to a lesser extent. The main barrier to the implementation of home modifications to accommodate the care recipients memory loss was skepticism about their usefulness. Regarding the removal of physical barriers, financial constraints were most frequently mentioned.

Association of the Spatial Layout of the Home and ADL Abilities Among Older Adults With Dementia

We investigated the relationship between architectural space syntax measures describing the spatial layout of a home and activities of daily living (ADL) among people with dementia. We visited the homes of 82 participants in a dementia care comparative effectiveness clinical trial and measured the space syntax variables intelligibility and convexity along with several clinical variables, including ADLs. In regression models, we estimated the cross-sectional association between space syntax measures and ADLs. Higher convexity was associated with worse performance of basic but not instrumental ADLs (adjusted β =19.2, P = .02). Intelligibility was not associated with ADLs. These results imply that enclosed rooms with a clearly legible meaning and function might be better memorized and associated with the spatial layout of the home resulting in better basic ADL performance. These results warrant further research on space syntax measures in the home environment of people with dementia, including longitudinal study, which we are pursuing.

12-month incidence, prevalence, persistence, and treatment of mental disorders among individuals recently admitted to assisted living facilities in Maryland

BACKGROUND To estimate the 12-month incidence, prevalence, and persistence of mental disorders among recently admitted assisted living (AL) residents and to describe the recognition and treatment of these disorders. METHODS Two hundred recently admitted AL residents in 21 randomly selected AL facilities in Maryland received comprehensive physician-based cognitive and neuropsychiatric evaluations at baseline and 12 months later. An expert consensus panel adjudicated psychiatric diagnoses (using DSM-IV-TR criteria) and completeness of workup and treatment. Incidence, prevalence, and persistence were derived from the panels assessment. Family and direct care staff recognition of mental disorders was also assessed. RESULTS At baseline, three-quarters suffered from a cognitive disorder (56% dementia, 19% Cognitive Disorders Not Otherwise Specified) and 15% from an active non-cognitive mental disorder. Twelve-month incidence rates for dementia and non-cognitive psychiatric disorders were 17% and 3% respectively, and persistence rates were 89% and 41% respectively. Staff recognition rates for persistent dementias increased over the 12-month period but 25% of cases were still unrecognized at 12 months. Treatment was complete at 12 months for 71% of persistent dementia cases and 43% of persistent non-cognitive psychiatric disorder cases. CONCLUSIONS Individuals recently admitted to AL are at high risk for having or developing mental disorders and a high proportion of cases, both persistent and incident, go unrecognized or untreated. Routine dementia and psychiatric screening and reassessment should be considered a standard care practice. Further study is needed to determine the longitudinal impact of psychiatric care on resident outcomes and use of facility resources.

A New Home-Based Mental Health Program for Older Adults: Description of the First 100 Cases

BACKGROUND The Geriatric Psychiatry Outreach (GO) Program began in 2005 and provides in-home psychiatric evaluation and treatment for older adults who have difficulty getting to an office-based setting. METHOD An initial assessment was conducted on the first 100 patients seen by the program and follow-up treatment was provided as clinically indicated. RESULTS The mean age of patients seen was 79.7 (SD: 8.2), 74% were women, and the most common psychiatric diagnoses were depression (50%) and dementia (45%), with a mean of 1.4 (SD: 0.6) psychiatric diagnoses per patient. The patients had a mean of 4.8 (SD: 2.9) medical diagnoses and were on a mean of 6.8 (SD: 4.0) prescription and 2.2 (SD: 1.2) nonprescription medications. Patients received a mean of 4.2 (SD: 4.2) in-person visits and a mean of 30.2 (SD: 36.5) additional contacts related to their care, such as phone calls, e-mails, and faxes. CONCLUSIONS Providing psychiatric services at home for older adults with mental illness is a much needed but rarely available service. Such patients typically have a complex combination of medical and psychiatric diagnoses and benefit from contacts in addition to the face-to-face visits.

Comprehensive home-based care coordination for vulnerable elders with dementia: Maximizing Independence at Home-Plus—Study protocol

Introduction Despite availability of effective care strategies for dementia, most health care systems are not yet organized or equipped to provide comprehensive family-centered dementia care management. Maximizing Independence at Home-Plus is a promising new model of dementia care coordination being tested in the U.S. through a Health Care Innovation Award funded by the Centers for Medicare and Medicaid Services that may serve as a model to address these delivery gaps, improve outcomes, and lower costs. This report provides an overview of the Health Care Innovation Award aims, study design, and methodology. Methods This is a prospective, quasi-experimental intervention study of 342 community-living Medicare–Medicaid dual eligibles and Medicare-only beneficiaries with dementia in Maryland. Primary analyses will assess the impact of Maximizing Independence at Home-Plus on risk of nursing home long-term care placement, hospitalization, and health care expenditures (Medicare, Medicaid) at 12, 18 (primary end point), and 24 months, compared to a propensity-matched comparison group. Discussion The goals of the Maximizing Independence at Home-Plus model are to improve care coordination, ability to remain at home, and life quality for participants and caregivers, while reducing total costs of care for this vulnerable population. This Health Care Innovation Award project will provide timely information on the impact of Maximizing Independence at Home-Plus care coordination model on a variety of outcomes including effects on Medicaid and Medicare expenditures and service utilization. Participant characteristic data, cost savings, and program delivery costs will be analyzed to develop a risk-adjusted payment model to encourage sustainability and facilitate spread.

What makes a difference to patients

Abstract To make a difference to patients who increasingly suffer multiple chronic conditions, in a healthcare system that is capable of providing excellent care but is often ineffective and at cross-purposes in its application, means being prepared to take a different approach not only to the delivery of patient care, but to the education of physicians and other healthcare professionals. The model we must now practice and teach is one that emphasizes collaboration and prevention, quality and efficiency. Changes in practice recommended by the 2001 US Institute of Medicine report are being implemented system-wide, following the enactment of the US Patient Protection and Affordable Care Act. This paper discusses the evolving needs of patients with chronic psychiatric illness, and the psychiatrists role in a rapidly changing healthcare landscape as a care provider, an interdisciplinary role model, and educator. In an aging population in which multi-morbidity is the norm, episodic, crisis-driven care is prohibitively expensive and does not serve patients well. Yet we still teach that model of care. The medications we prescribe for psychiatric illness, particularly antipsychotics, can cause and/or aggravate some of the commonest chronic medical illnesses; psychiatric educators must address the management of these complications. The management of chronic psychiatric illness in multi-morbid patients demands that we practice and teach a ‘whole patient’ approach to care, preferably delivered as part of a patient-centred team. The Affordable Care Act has mandated and created opportunities for new models designed to facilitate this, and a paradigm shift is needed in medical education. Clinicians must become adept at identifying underlying and contributing factors and collaborating with the patient, other providers, and the patients family and significant others. Psychiatric formulation and patient care rely on these principles; we must now teach their application to other specialties, disciplines and professions.

UNMET NEEDS OF DEMENTIA CAREGIVERS AT HOME

the COPE CT study, 69% are female, mean (sd) age1⁄462.1 (11.7), 77% White, 17% Black, 55% daughters/in-law, 18% spouses, and 17% sons/in-law. Among the first 83 CGs completing the COPE intervention, 58% reported that taking care of themselves was the biggest challenge, followed by engaging the PWD inmeaningful activities (28%), caring for a PWD who rejects or refuses help (21%), and caring for a PWDwho is worried, fearful, or anxious (16%). The proportion of total challenges reported by these CGs (N1⁄4216) that were “very difficult” was reduced from 60% at the start of the COPE intervention to 4% at the end. Nearly all of these challenges were reduced (75%) or eliminated (21%) by intervention end. Conclusions:CGs in the COPE CT study were most likely to report that dementia care-related challenges they faced pertained to taking care of themselves. The COPE intervention shows preliminary evidence of resolving or reducing most challenges faced by CGs of PWD living at home.

UNMET NEEDS OF COMMUNITY-RESIDING PERSONS WITH DEMENTIA

OBJECTIVES To determine the prevalence and correlates of unmet needs in a sample of community-residing persons with dementia (PWD) and their informal caregivers. DESIGN Analysis of cross-sectional, baseline participant characteristics before randomization in a care coordination intervention trial. SETTING Baltimore, Maryland. PARTICIPANTS Community-residing PWD (n=254) and their informal caregivers (n=246). MEASUREMENTS In-home assessments of dementia-related needs based on the Johns Hopkins Dementia Care Needs Assessment. Bivariate and multivariate regression analyses were conducted to identify demographic, socioeconomic, clinical, functional, and quality-of-life correlates of unmet needs. RESULTS The mean number of unmet needs was 7.7±4.8 in PWD and 4.6±2.3 in caregivers, with almost all PWD (99%) and caregivers (97%) having one or more unmet needs. Unmet needs in PWD were significantly greater in those with higher cognitive function. Ninety percent of PWD had unmet safety needs, more than half had unmet needs for meaningful activities, and almost one-third had not received a prior evaluation or diagnosis. Higher unmet needs in PWD was significantly associated with nonwhite race, lower income, less impairment in activities of daily living, and more symptoms of depression. For caregivers, more than 85% had unmet needs for resource referrals and caregiver education. Higher unmet caregiver needs was significantly associated with nonwhite race, less education, and more symptoms of depression. CONCLUSION Many community-residing PWD and their caregivers have unmet dementia-related needs for care, services, and support. Providers should be aware that unmet needs may be higher in minority and low-income community residents, caregivers with lower education, and individuals with early-stage dementia. Identifying and treating symptoms of depression in PWD and caregivers may enable them to address their other unmet needs.

DEMENTIA AND HEARING CARE DISPARITIES: PREVALENCE OF PROXY-RATED HEARING LOSS AND HEARING AID USE IN A COMMUNITY-DWELLING COHORT OF DIVERSE OLDER ADULTS WITH DEMENTIA

(Australia) which aimed to improve knowledge about, attitudes toward, and uptake of, respite services and strategies by people with dementia and their carers. The intervention supported reconceptualisation of respite through: media and awareness raising; education; a website; and decision aids and checklists for finding and choosing respite services and strategies. An individualised respite coaching program was also offered. A longitudinal survey evaluated changes in carer knowledge about, attitudes towards, and uptake of respite services, as well as carer need, burden and self-efficacy for those exposed to Community Level Activities (e.g. media, website, education) (Group 1) and those who additionally self-selected to participate in Respite Coaching (Group 2). Results: Preliminary analysis was conducted on n1⁄444/70 eligible carers [n1⁄426 (Group 1) and n1⁄418 (Group 2)]. Carers in Group 2 showed significant improvements for: respite knowledge [e.g. ‘ability to name three respite services’ (Z1⁄4 -2.280, p1⁄4.023)], positive attitudes (e.g. ‘respite services are useful and beneficial to my family member/friend’ (Z1⁄4 -2.157, p1⁄4 .031)]; self-efficacy to gain respite [e.g. ‘if I want to, I can easily access the appropriate respite’ (Z1⁄4 -1.994, p1⁄4.046]; intentions to use [t (17) 1⁄4 -2.335, p1⁄4.032]; and levels of personal gain from caring (Z1⁄4 -2.543, p1⁄4.011). Without coaching, Group 1 carers experienced negative changes to their beliefs that respite services are ‘useful and beneficial.) (Z1⁄4 -1.977, p1⁄4.048); and their ability to ‘find organisations that provide services in the community to help them care.’ [t (25)1⁄4 2.465, p1⁄4.021]. Group 1 carers also showed a decrease in their confidence to ‘handle future care problems’ [t (25) 1⁄4 1.800, p1⁄4.016], ‘keep their family member/ friend as independent as possible’ [(t (25) 1⁄4 1.678, p1⁄4 .030] and reported higher ‘role captivity’ (t (24) 1⁄4 -2.092, p 1⁄4.047). Conclusions:The study highlights the potential for individualised coaching to enhance community level activities to promote knowledge, confidence and skills relevant to achieving respite for carers of people with dementia.