Unmet Needs of Community‐Residing Persons with Dementia and Their Informal Caregivers: Findings from the Maximizing Independence at Home Study

Abstract

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 prior to randomization in a care coordination intervention trial. SETTING Baltimore, MD. 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 in PWD was 7.7 (SD=4.8) and 4.6 (SD=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 among those with higher cognitive function. Ninety percent of PWD had unmet safety needs, over half had unmet needs for meaningful activities, and almost one-third had not received a prior evaluation or diagnosis. Higher unmet needs in PWD were associated significantly with non-white race, lower incomes, 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 were associated significantly with non-white 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 among 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.

Clinical practice guidelines for dementia in Australia

“…Carers are often not provided with enough support or adequate training to effectively provide care. 33 There is evidence that tailored multifaceted programs involving both the carer and the person with dementia can improve quality of life for both. 34 Carers should have access to programs that include education regarding dementia; information regarding relevant services such as respite; information about support organisations such as Alzheimer's Australia; individualised care management strategies to overcome specific problems; training in providing care and communicating most effectively with the person with dementia; and support regarding coping strategies to maintain their own wellbeing, including stress management.…”

Caring for seniors living with dementia means caring for their caregivers too

“…3 As dementia progresses, people increasingly rely on informal caregivers for assistance with day-to-day activities, management of symptoms, and maintenance of a supportive environment that provides an optimal quality of life. 3 Informal caregivers are also essential to translate the values of the person living with dementia into decision-making.…”

“…3 As dementia progresses, people increasingly rely on informal caregivers for assistance with day-to-day activities, management of symptoms, and maintenance of a supportive environment that provides an optimal quality of life. 3 Informal caregivers are also essential to translate the values of the person living with dementia into decision-making. 4 Studies show that informal caregivers of people with dementia experience high levels of burden, distress, social isolation, physical ill health, and financial hardship.…”

Quality improvement in neurology

“…Screening for safety concerns is a major unmet need for patients with dementia. 13 Injuries associated with falls, accidents, and aggression have serious adverse effect on the quality of life of patients and caregivers. It is possible to reduce the risk of these outcomes through simple preventive measures.…”

“…In routine practice, persons with dementia may not be assessed regularly for changes in their ability to perform both basic and instrumental activities of daily living. 13 Frequent and comprehensive assessments allow health care providers to track these changes and make timely interventions aimed at supporting function or mitigating disability.…”