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

Authors

  • Betty S. Black PhD,

    Corresponding author
    1. Department of Psychiatry and Behavioral Sciences, School of Medicine, Johns Hopkins University, Baltimore, Maryland
    • Address correspondence to Betty S. Black, Department of Psychiatry and Behavioral Sciences, 600 North Wolfe Street, Meyer 3-142, Baltimore, MD 21287. E-mail: bblack@jhmi.edu

    Search for more papers by this author
  • Deirdre Johnston MB, BCh,

    1. Department of Psychiatry and Behavioral Sciences, School of Medicine, Johns Hopkins University, Baltimore, Maryland
    Search for more papers by this author
  • Peter V. Rabins MD, MPH,

    1. Department of Psychiatry and Behavioral Sciences, School of Medicine, Johns Hopkins University, Baltimore, Maryland
    Search for more papers by this author
  • Ann Morrison PhD, RN,

    1. Morrison and Associates, LLC, Baltimore, Maryland
    Search for more papers by this author
  • Constantine Lyketsos MD, MHS,

    1. Department of Psychiatry and Behavioral Sciences, School of Medicine, Johns Hopkins University, Baltimore, Maryland
    2. Johns Hopkins Bayview Medical Center, Baltimore, Maryland
    Search for more papers by this author
  • Quincy M. Samus PhD

    1. Department of Psychiatry and Behavioral Sciences, School of Medicine, Johns Hopkins University, Baltimore, Maryland
    2. Johns Hopkins Bayview Medical Center, Baltimore, Maryland
    Search for more papers by this author

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 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.

Seventy percent of the estimated 5.4 million people in the United States who have Alzheimer's disease and other types of dementia are cared for in the community by family members and friends.[1] Although most of these individuals have mild to moderate dementia, some with severe dementia are cared for at home rather than in nursing homes, where most people with advanced dementia reside before death.[2]

Dementia-related needs of community-residing individuals are multidimensional and based on the types and severity of their cognitive impairments, functional dependencies, neuropsychiatric symptoms (e.g., behavioral problems, depression), and medical comorbidities.[3] In addition to needing a dementia evaluation and advance care planning early in the illness, persons with dementia (PWD) need increasing assistance with instrumental and basic activities of daily living (ADLs), meaningful activities suited to their interests and capabilities, treatment and management of dementia-related symptoms, and care for coexisting physical illnesses. Most importantly, they need knowledgeable caregivers to ensure a safe and supportive environment where the individual's dignity is protected and quality of life is maximized.

Caregiving responsibilities for community-dwelling PWD are often assumed gradually as the PWD's needs increase and change with disease progression. In addition, many U.S. caregivers face a daunting task of navigating a loose network of long-term care supports that increases the complexity of their role. The burdens and stress of these caregivers are often higher than for caregivers of individuals with other illnesses,[4, 5] and depression is common.[6] Caregiver tasks include assisting with ADLs, managing the individual's safety and behavioral symptoms, identifying and coordinating supportive services, facilitating healthcare visits, advocating for the PWD, and making proxy financial and healthcare decisions. All this work occurs within a context of loss—losses for the PWD and losses for the caregiver.

Unmet dementia-related needs for care, services, and support are known to increase the risk of undesirable health outcomes. For example, a study of more than 5,800 PWD and their caregivers found that greater unmet need for ADL assistance was predictive of nursing home placement and death.[7] Caregiver stress is also predictive of nursing home admission for PWD,[8] and unmet needs are associated with lower quality of life (QOL).[9]

Prior efforts to define[10] and describe unmet needs in PWD and their caregivers,[11-13] have included the use of multiitem needs assessment instruments.[13-15] No single measure is widely used in community settings, and assessment tools differ in terms of which need domains are included, the extent to which caregiver needs are assessed, and the methods used to identify unmet needs.

This study examined unmet needs in a community-residing sample of PWD and their caregivers using a comprehensive, multidimensional needs assessment tool.[9] The study's purpose was to address two questions: What is the prevalence of unmet dementia-related needs in community-residing individuals? What are the primary correlates of their unmet needs? Using Andersen's Behavioral Model of Health Services Use[16] as a framework, the relationships between unmet needs and factors hypothesized to predispose individuals to use services (e.g., demographics), that enable or impede service use (e.g., social and economic characteristics), and that reflect need for care (e.g., clinical and functional characteristics) were examined. Identifying primary correlates of unmet needs may help dementia care and service providers develop strategies for reducing unmet needs in this population.

Methods

This study examined cross-sectional, baseline data on PWD and their caregivers before randomization into a single-blind controlled trial evaluating a dementia care coordination intervention (the Maximizing Independence (MIND) at Home study). The Johns Hopkins Medicine institutional review board approved this research. Oral consent was obtained for telephone screening interviews, and written consent was obtained for all participants at the in-home assessment. For those who lacked consent capacity, proxy consent was obtained from their legally authorized representatives as defined according to the Maryland Health Care Decisions Act, and assent was obtained from the cognitively impaired individuals.

Study Procedures and Measures

Participants lived in a geographically defined area of 28 postal codes in Baltimore, Maryland. Inclusion criteria for the primary participants were that they be community-residing, English-speaking, aged 70 and older with a cognitive disorder (mild cognitive impairment (MCI) or dementia), and have a study partner. Recruitment methods included obtaining referrals from community service organizations, sending letters to clients of community aging services, and promotions at local community events and through news media.

A two-stage assessment process was used to identify eligible individuals from among those referred. First, telephone screening identified persons with probable cognitive disorder using the 11-item Telephone Interview for Cognitive Status (TICS, score range 0–41)[17] and the 16-item Informant Questionnaire for Cognitive Disorders in the Elderly (IQCODE, score range 16–80).[18] A positive screen was defined as a TICS score of <31 and an IQCODE score of >52.[17, 19] Second, clinicians (geriatric psychiatrist, clinical nurse specialist) conducted in-home assessments of those who screened positive to identify individuals with a cognitive disorder. Assessments included reviews of medical and mental health histories, medications, physical health problems, mental status and neurological examinations, measures of cognition and function, and use of health and social services. Clinicians reviewed the assessment data to determine whether individuals met Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision (DSM-IV-TR)[20] criteria for dementia or cognitive disorder not otherwise specified, referred to here as MCI. Individuals who met DSM-IV-TR criteria received a baseline study visit to administer quantitative assessments of ADLs, neuropsychiatric symptoms, depression, and QOL. Table 1 provides a description of the study's quantitative measures. Dementia severity was based on Mini-Mental State Examination (MMSE)[23] scores of >20 for mild, 11 to 20 for moderate, and <11 for severe.[32] Primary participant demographic and socioeconomic data included age, sex, race, education, living arrangement, and income.

Table 1. Structured Measurement Instruments
MeasureAdministered ToItems, nScore Range (Other)Score DirectionInternal Reliability for This Studya
  1. a

    Cronbach alpha.

  2. b

    Items 1–5 were included in the analyses; item 6 was excluded.

  3. c

    Measure of quality of life.

  4. ADL = activity of daily living; CG = caregiver; PWD = person with dementia; NA = not available.

PWD
Lawton and Brody Instrumental ADLs[21]CG88–31Higher = worse0.88
Psychogeriatric Dependency Rating Scale for basic ADLs[22]CG160–39Higher = worse0.89
Mini-Mental State Examination[23]PWD300–30Higher = betterNA
Neuropsychiatric Inventory Questionnaire[24]
SeverityCG120–36Higher = worse0.77
DistressCG120–60Higher = worse0.78
Cornell Scale for Depression in Dementia[25]PWD & CG190–38Higher = worse0.76
Quality of Life with Alzheimer Disease[26]
Self-ratedPWD1313–52Higher = better0.89
Caregiver-ratedCG1313–52Higher = better0.82
Alzheimer Disease Related Quality of Life[27]CG400–100Higher = better0.84
Caregivers
Zarit Burden Inventory[28]CG120–48Higher = worse0.87
Geriatric Depression Scale[29]CG150–15Higher = worseNA
Caregiver Activity Surveyb,[30]CG5(Time)
Medical Outcomes Study 12-item Short Form Surveyc,[31]CG120–100Higher = betterNA

Of the 1,275 individuals referred to the study, 664 were eligible for and agreed to the telephone screen, and 371 screened positive. Of these, 360 completed an in-home clinician's assessment, and 303 were eligible for participation in the MIND at Home study (265 (85%) with dementia, 38 (13%) with MCI). These analyses include only those with dementia who had an informal caregiver (n = 254).

An informal caregiver was defined as a person in contact with the primary participant at least once a week and who the participant relied on for assistance. During the baseline study visit, quantitative measures were used to determine the caregiver's health and well-being. A single item was used to measure caregiver self-rated health as excellent, very good, good, fair, or poor.[33] Other measures, described in Table 1, assessed caregiver burden, symptoms of depression, QOL, and time spent per day caring for the primary participant. Caregiver demographic and socioeconomic data included age, sex, race, education, employment status, and relationship to the primary participant.

The Johns Hopkins Dementia Care Needs Assessment (JHDCNA) was used to identify participant and caregiver dementia-related needs.[34, 35] A multidisciplinary group of clinical dementia care experts developed the JHDCNA, which is based on best practices in dementia care,[3] suggesting content validity. Although its psychometric properties have not been formally tested, a prior study demonstrated concurrent validity with QOL measures.[9] The JHDCNA includes 15 care recipient need domains (77 items) and four caregiver need domains (12 items), with standardized descriptions and definitions for each item (Figure 1). Clinicians completed the JHDCNA after each in-home assessment and based their judgments on interviews with the PWD and caregiver and a visual assessment of the PWD's home and considered the individuals' perspectives on their needs. Each item on the JHDCNA is assessed as being needed or not and, if needed, whether the need is met or unmet. A met need is one that is being addressed and for which potential benefits of available interventions have been achieved to the extent possible for the individual. A need is considered unmet if it has not been addressed, and potentially beneficial interventions are available, or it has been or is being addressed, but potential benefits of available interventions have not been achieved.

Figure 1.

Percentage of persons with dementia (PWD; n = 254) and caregivers (n = 245) with any unmet needs according to Johns Hopkins Dementia Care Needs Assessment domains. IADLs = instrumental activities of daily living; ADLs = activities of daily living.

Data Analyses

Prevalence of unmet needs was based on the percentage of participants with one or more unmet need items in each domain. Descriptive statistics (frequencies, means, standard deviations) were calculated for all variables. To identify correlates of unmet needs, participant characteristics were categorized as predisposing (e.g., demographic), enabling (e.g., social and economic characteristics), and need for care (e.g., clinical and functional characteristics) factors. Bivariate analyses (t-tests, Pearson correlations, analysis of variance) were used to determine relationships between total percentage of unmet needs, calculated as (number of unmet need items/number of need items assessed) × 100 (the primary outcome measure) and participants' other characteristics. Multiple linear regression analyses were used to identify which characteristics were the primary correlates of unmet needs in PWD and caregivers. For each regression analysis, the model-building process began by including independent variables with P < .10 based on bivariate analyses, and the forward stepwise method was used to identify the most-parsimonious model that would explain the greatest amount of variance associated with unmet needs. SPSS 19.0 (IBM Corporation, Armonk, NY) was used for all analyses; P < .05 was considered statistically significant.

Results

Persons with Dementia

The mean age of PWD who had a caregiver was 83.6 ± 5.9; 65% were female, 68% were white, and 81% lived with others). Mean MMSE score was 17.7 ± 7.6, with 44% having mild, 38% moderate, and 18% severe dementia. Other sample characteristics are shown in Table 2.

Table 2. Characteristics of Persons with Dementia (n = 254) and Bivariate Relationships to Their Unmet Needs
CharacteristicValueUnmet Need,%, Mean±SDBivariate Relationship to Percentage of Unmet Needsa
  1. a

    Statistical tests: Pearson product-moment correlations (r), Student t-tests (t).

  2. b

    Missing data: education = 3, income = 77, Instrumental activity of daily living (IADLs) = 2, Psychogeriatric Dependency Rating Scale for basic activities of daily living (PGDRS) = 1, Mini-Mental State Examination (MMSE) = 2, Neuropsychiatric Inventory-Questionnaire (NPI-Q) Severity = 3, NPI-Q Distress = 5, Cornell Scale for Depression in Dementia (CSDD) = 20, Quality of Life-Alzheimer Disease (QOL-AD) Self-rated = 34, QOL-AD caregiver-rated = 11.

  3. c

    A nosology of current health problems was used to classify each condition according to the following general organ system or disease group categories: cardiovascular or hypertension, pulmonary, central nervous system or sensory, endocrine, rheumatology or orthopedic, gastrointestinal, hematology or oncology, renal or urological; the total number of health problem categories was used as a health status indicator.

  4. df = degrees of freedom; SD = standard deviation.

Predisposing factors
Age, mean ± SD83.6 ± 5.9 r = −0.044, df = 1, P = .49
Sex,%
Female65.010.3 ± 6.2t = −0.52, df = 252, P = .61
Male35.09.9 ± 6.5
Race,%
White68.19.1 ± 5.5t = 3.56, df = 252, = .001
Nonwhite31.912.4 ± 7.4
Enabling factors
Education, years, mean ± SDb13.0 ± 3.7 r = −0.163, df = 1, = .01
Living arrangement,%
Alone18.912.0 ± 7.4t = −2.27, df = 252, = .02
With others81.19.8 ± 6.0
Income, $,% b
<25,00027.112.0 ± 7.0t = 2.587, df = 175, = .01
≥25,00072.99.3 ± 5.8
Need factors
Number of medications, mean ± SD6.4 ± 3.1 r = −0.124, df = 1, = .049
Number of health problem categories, mean±SDc3.0 ± 1.4 r = 0.090, df = 1, P = .15
IADL score (range 8–31), mean ± SDb23.0 ± 5.7 r = −0.186, df = 1, = .003
PGDRS score (range 0–39), mean ± SDb10.4 ± 8.2 r = −0.112, df = 1, = .07
MMSE score (range 0–30), mean ± SDb17.8 ± 7.6 r = 0.157, df = 1, P = .01
Dementia severity (MMSE score)  F = 4.749, df = 2, = .009
Mild (>20) 11.5 ± 6.8 
Moderate (11–20) 9.8 ± 6.2 
Severe (<11) 8.2 ± 4.6 
NPI-Q Score, mean±SDb
Severity (range 0–36)7.7 ± 6.1 = 0.061, df = 1, = .33
Distress (range (0–60)9.6 ± 8.5 = 0.085, df = 1, = .18
CSDD score (range 0–38), mean ± SDb6.1 ± 4.5 r = 0.217, df = 1, P = .001
QOL-AD (range 13–52), mean ± SDb   
Self-rated37.7 ± 6.8 = −0.313, df = 1, P < .001
Caregiver rated31.2 ± 6.0 = −0.225, df = 1, P < .001
Alzheimer Disease Related Quality of Life score (range 0–100), mean ± SD83.1 ± 13.2 = −0.047, df = 1, = .45

Based on the JHDCNA, 99% of PWD had one or more unmet needs; 42% had eight or more unmet needs (average 7.7 ± 4.8). Figure 1 shows that unmet needs were most common for PWD in the domain of safety (90.6%), such as fall risk management (74.8%), home safety evaluation (44.5%), and wander risk management (33.9%). Unmet needs were also common in the domains of general health and medical care (62.6%), meaningful activities (53.1%), legal issues and advance care planning (48.0%), and evaluation and diagnosis of dementia, with 31.5% having no prior dementia assessment.

Bivariate relationships between total percentage of unmet needs and PWD predisposing, enabling, and need factors are shown in Table 2. Individuals with significantly higher unmet needs were nonwhite (95% African American), had less education and lower income, and lived alone. Other significant correlates of unmet needs were total medications, limitations in instrumental ADLs, and MMSE, Cornell Scale for Depression in Dementia (CSDD), and Quality of Life in Alzheimer's Disease scores according to the PWD and caregiver. Those with mild dementia had significantly higher total unmet needs than those with severe dementia; unmet needs of those in the moderate stage did not differ significantly from those with mild or severe dementia.

Table 3 shows that four variables remained statistically significant in the multiple regression analysis: CSDD score, race, Psychogeriatric Dependency Rating Scale for basic ADLs score, and income, which accounted for 17.7% of variance in total percentage of unmet needs. When the same series of bivariate and multivariate analyses were conducted using data that also included the 10 PWD without a caregiver, the regression analysis (= 10.303, degrees of freedom = 2, P < .001) showed that three factors (CSDD score (P < .001), race (= .001), and living alone (P = .02)) were associated with unmet needs (adjusted coefficient of determination=0.164).

Table 3. Multiple Regression Models for Percentage of Unmet Needs in Persons with Dementia (PWD) and Caregivers
Variables in Final Regression Models in Order of EntryaBeta t P-Value95% Confidence Interval
  1. a

    Included all variables significant at P < .10 based on individual bivariate analyses; forward stepwise method.

  2. b

    F = 8.004, degrees of freedom (df) = 4, P < .001; adjusted coefficient of determination (R2) = 0.177.

  3. c

    F = 12.480, df = 3, P < .001; adjusted R2 = 0.127.

Model for PWDb
Constant 8.202<.00110.062–16.462
Cornell Scale for Depression score (range 0–38)0.2883.584<.0010.189–0.657
White−0.270−3.260.001−6.048 to –1.479
Psychogeriatric Dependency Rating Scale for basic activities of daily living score (range 0–39)−0.177−2.145.03−0.295 to –0.012
Low income (<$25,000)−0.169−2.116.04−4.512 to –0.151
Model for caregiversc
Constant 8.260<.00124.467–39.793
Geriatric Depression Scale score (range 0–15)0.2924.786<.0010.693–1.662
White race−0.166−2.683.008−7.422 to –1.137
Education years−0.139−2.240.03−1.037 to –0.066

Caregivers of PWD

The study included 246 informal caregivers, eight of whom served as caregiver for two PWD. The majority of caregivers were female (75%), white (69%), nonspouses (59%), and not employed (51%); their mean age was 66.1 ± 13.3. Caregivers spent an average of 6.7 ± 6.2 hours per day providing care to the PWD, and 22% rated their health as fair or poor. Other caregiver characteristics are shown in Table 4.

Table 4. Characteristics of Caregivers (n = 246) and Bivariate Relationships to Their Unmet Needs
CharacteristicValueUnmet Need,%, Mean±SDBivariate Relationship to Percentage of Unmet Needsa
  1. Nine caregivers each provided care to two care recipients with dementia.

  2. a

    Statistical tests: Pearson product-moment correlations (r), Student t-tests (t).

  3. b

    Missing data: age = 3, education = 3, employment = 2, self-rated health = 2, Zarit Burden Inventory = 1, Geriatric Depression Scale (GDS) = 2, Caregiver Activity Survey = 4, (Medical Outcomes Study 12-item Short-From Survey (SF-12) = 1.

  4. c

    Included all caregivers for PWD (n = 254).

  5. df = degrees of freedom; SD = standard deviation.

Predisposing factors
Age, mean ± SDb66.1 ± 13.3 = −0.029, df = 1, = .66
Sex,%
Female74.824.1 ± 12.1t = −0.227, df = 242, P = .82
Male25.223.7 ± 11.8
Race,%
White68.722.5 ± 11.5t = 3.025, df = 242, P = .003
Nonwhite31.327.4 ± 12.3
Enabling factors
Education, years, mean ± SDb15.4±3.0 r = −0.179, df = 1, P = .005
Employed,%b
No50.824.2 ± 12.7t = .272, df = 240, = .79
Yes48.423.8 ± 11.3
Relationship to care recipient,%c
Spouse41.524.3 ± 12.3t = −0.278, df = 242, = .78
Other58.523.8 ± 11.8
Need factors
Self-rated health,%b
Excellent, very good, good77.622.5 ± 11.5= 3.733, df = 240, P < .001
Fair, poor21.529.4 ± 12.4
Zarit Burden Inventory score (range 0–48), mean ± SDb15.0 ± 8.6 = 0.126, df = 1, = .05
GDS score (range 0–15), mean±SDb2.8 ± 3.0 = 0.285, df = 1, P < .001
Caregiver Activity Survey, h/d, mean ± SDb,c6.7 ± 6.2 r = 0.083, df = 1, = .19
SF-12 score (range 0–100), mean ± SDb
Physical health48.3 ± 11.0 r = −0.208, df = 1, P = .001
Mental health48.1 ± 10.1 = −0.185, df = 1, P = .004

Based on the JHDCNA, 97% of caregivers had one or more unmet needs; 33% had more than five unmet needs (average 4.6 ± 2.3). Caregiver's most common unmet needs (Figure 1) were for resource referrals (88.6%), followed by caregiver dementia education (85.4%), mental health care (45.1%), and general health and medical care (22.0%). On average, 24.1% of all need items assessed on the JHDCNA for caregivers were unmet.

Bivariate relationships between percentage of unmet need and caregiver predisposing, enabling, and need factors are shown in Table 4. Caregivers with significantly higher unmet needs were nonwhite (95% African American) and had less education, fair or poor self-rated health, more symptoms of depression, and lower QOL based on Medical Outcomes Study 12-item Short Form Survey scores. Caregiver burden was not statistically significant. In multiple regression analysis (Table 3), symptoms of depression, race, and years of education remained statistically significant, accounting for 12.7% of variance in caregivers' total percentage of unmet needs.

Discussion

This study demonstrates that dementia-related needs for care, services, and support of community-residing PWD and their caregivers are often unmet. Unmet needs of PWD were most common in domains of personal and home safety, general health and medical care, meaningful activities, legal issues and advance care planning, and evaluation and diagnosis of dementia. Caregivers' unmet needs were most common in domains of resource referrals, caregiver education, and mental health care. The primary correlates of unmet needs in PWD and their caregivers included predisposing, enabling, and need factors. Being nonwhite or having more symptoms of depression were significantly associated with more unmet needs for caregivers and PWD. In addition, unmet needs were significantly higher for PWD with lower incomes or fewer ADL impairments and for caregivers with less education.

Ninety percent of PWD had unmet safety needs, particularly for fall risk and wander risk management and home safety evaluations. This domain also includes needs related to driving safety and safe management of guns and tools at home. Lack of attention to safety can lead to the injury or death of PWD or others and to costly and distressing emergency department visits and hospitalizations. Safety has been identified as one of five critical areas of risk for PWD and their caregivers, and interventions have been suggested that included home assessment and alterations, use of monitoring devices, and eliminating access to items that pose a danger.[4]

More than 60% of PWD had unmet needs for medical care, including the need to see their primary care provider; a medical subspecialist; or a dental, vision, or hearing specialist. PWD are more likely than those without dementia to have other chronic medical conditions and to be hospitalized for those conditions.[1] This high rate of unmet medical need raises the possibility that earlier recognition could prevent hospitalizations for comorbid conditions that could be recognized sooner and addressed in primary care settings.[36] Because worse general medical health is associated with poorer outcomes in PWD,[37] earlier recognition might improve QOL and lower the costs of care.

More than half of the PWD had unmet needs for meaningful activities, which includes needs for adult day care, attending senior centers, and in-home activities. Prior studies have also found high unmet needs for daytime activities and company for PWD.[12, 38] One study demonstrated that in-home activities customized to the interests and capabilities of PWD can significantly increase their engagement, reduce behavioral symptoms, and reduce caregiver burden.[39]

Forty-eight percent of PWD had unmet needs in the area of legal issues and advance care planning. This domain includes designating someone to have general and healthcare power of attorney (POA) for the PWD and documenting wishes for end-of-life care and distribution of personal property after death. These issues must be addressed early on, when individuals still have decisional capacity. This domain may also have relevance for caregivers. For example, several PWD in this study were designated years earlier to have POA for a spouse who was now the caregiver, but no changes were made after dementia onset, leaving caregivers who are vulnerable to their own health emergencies without a capable proxy decision-maker.

Almost one-third of PWD had not received a prior dementia evaluation or diagnosis. The prevalence of undiagnosed dementia in primary care settings is unknown but is thought to be substantial.[40] A range of provider, patient, caregiver, and health system factors that hinder early detection of dementia has been identified, many of which are amenable to interventions.[40] Early diagnosis provides opportunities to initiate treatments for dementia symptoms and for individuals and families to plan for future care.

More than 85% of caregivers had unmet needs for referrals to community resources (e.g., Alzheimer's Association) and caregiver education on topics such as how dementia affects individuals and their loved ones, availability of community-based services, and caregiver skills. Other studies have attributed high unmet needs for information or service use to caregiver lack of awareness, lack of perceived need, or belief that services would not be helpful.[38, 41] Although caregiver unmet needs for services have been associated with greater stress[42] and higher burden,[38] caregiver burden was not statistically significant in this study, although 45% of caregivers had unmet needs in the mental health domain, most of whom needed emotional support or respite care.

Symptoms of depression were correlated with more unmet needs in caregivers and care recipients. Depression is a frequent complication of dementia[6, 43] and is associated with caregiver depression and burden.[44] A previous study[45] also found that depressed caregivers had higher unmet needs than those without depression. The current study's cross-sectional data could not be used to determine whether there is a causal relationship between depressive symptoms and unmet needs, but it is plausible that identifying and treating depression in PWD and their caregivers may enable them to better address their other unmet needs.

The finding that PWD with milder cognitive and functional impairment had more unmet needs may seem counterintuitive. It may be that these individuals are more likely to live alone and less likely to be recognized or assessed for their memory disorder or for other potential unmet needs.[46] When data on PWD without a caregiver were included in the analyses, living alone was significantly correlated with unmet needs. Few studies have examined relationships between dementia severity and unmet needs, and their findings are inconsistent,[11, 38] although studies using different assessment methods have found that PWD living alone have significantly higher unmet needs.[11, 47] Further analyses are needed to determine whether specific domains of unmet need vary according to dementia severity.

Demographic (predisposing) and socioeconomic (enabling) factors that are probably unrelated to dementia status (e.g., type or severity of dementia) were independently associated with unmet needs. It is not surprising that unmet needs were related to lower income in PWD and lower education in caregivers, because income and education can be enabling factors for obtaining information on and access to dementia-related services. In addition, nonwhite participants (mostly African American) had higher caregiver and care recipient unmet needs. A previous study[48] also found that blacks were more likely than whites to report unmet needs and had less desire to admit the PWD to a nursing home. Other studies suggest that African Americans with dementia live in the community longer than whites before nursing home admission—perhaps because of greater psychosocial support of family members—but with substantial unmet needs.[49, 50] To identify persons with unmet dementia-related needs, providers should be aware of demographic and socioeconomic factors that may influence knowledge of, access to, and attitudes toward use of healthcare and social services.

This study has a number of limitations. First, participants were not randomly selected and were recruited from one urban geographic area, limiting its generalizability. Second, this report is based on cross-sectional data that do not allow for establishing causal relationships between variables. Third, participants' unmet needs were based on the JHDCNA, which relies on clinician judgments that consider participant perspectives and may differ from findings derived from other needs assessment approaches. Factor analysis is warranted to determine whether the JHDCNA could include fewer items or domains for practical use in clinical settings. Fourth, the sample is not representative of people with a specific type of dementia. This study did not focus on identifying or describing the causes of dementia, primarily because the needs assessed on the JHDCNA may be relevant to all forms of dementia, regardless of etiology. Fifth, sampling bias could exist if people with higher unmet needs volunteered selectively for this study. Finally, although several significant theoretically driven correlates of unmet needs were identified, it was not possible to account for a substantial proportion of the variance in percentage of unmet needs. This implies that other factors, perhaps psychosocial or personal preferences not assessed here, play important roles in unmet dementia-related needs.

For all PWD to live safely and comfortably in the community for as long as possible, it is imperative that their needs for care, services, and support and those of their caregivers are met. This study suggests that dementia-related needs are often unmet and that some groups in particular, including African Americans, people with lower incomes, and caregivers with lower education, are at higher risk for unmet needs. Because symptoms of depression are associated with higher unmet needs in PWD and caregivers, screening for and treating depression may be a cricital factor in the process of helping to reduce unmet dementia-related needs. The MIND at Home study will determine whether a care coordination intervention can reduce unmet needs in PWD and their caregivers and enable those with dementia to live at home longer without compromising their QOL.

Acknowledgment

Paper presented at American Association of Geriatric Psychiatry Meeting, March 16–19, 2012, Washington, District of Columbia.

Conflict of Interest: Funded by Hoffberger Family Fund, LeRoyHoffberger, Harry and Jeannette Weinberg Foundation, Rosenberg Foundation, Hirschhorn Foundation, Stulman Charitable Foundation, Meyerhoff Foundation, Marc and Leonor Blum, Baltimore County Department of Aging, Blum Family, Lowell Glazer, Greif Family Fund, Marvin Schapiro Family Foundation, Lois and Phillip Macht, Eliasberg Family Foundation, Richard and Rosalee Davison, Alison & Arnold Richman, Moser Family Philanthropic Fund, Richard Lansburgh, and Anonymous. Support was also provided by The ASSOCIATED: Jewish Community Federation of Baltimore. Under an agreement with DEMeasure, Dr. Black and Dr. Rabins are entitled to a share of income received by DEMeasure from sales of the ADRQL questionnaire and scale used in the study described in this article. Dr. Black and Dr. Rabins have an ownership interest in DEMeasure. The Johns Hopkins University is managing the terms of this arrangement in accordance with its conflict-of-interest policies. Dr. Black and Dr. Rabins received funding from the ASSOCIATED: Jewish Federation of Baltimore. Dr. Black has a grant funded by the National Institute on Aging (R01 AG038440). Dr. Johnston and Dr. Morrison received grant funding from the ASSOCIATED: Jewish Federation of Baltimore. Dr. Lyketsos receives grant support (research or continuing medical education) from the National Institute of Mental Health, National Institute on Aging, the ASSOCIATED: Jewish Federation of Baltimore, Weinberg Foundation, Forest, Glaxo-Smith-Kline, Eisai, Pfizer, Astra-Zeneca, Lilly, Ortho-McNeil, Bristol-Myers, Novartis, National Football League, Elan, Functional Neuromodulation Inc. Dr. Lyketsos is a consultant or adviser to Astra-Zeneca, Glaxo-Smith-Kline, Eisai, Novartis, Forest, Supernus, Adlyfe, Takeda, Wyeth, Lundbeck, Merz, Lilly, Pfizer, Genentech, Elan, NFL Players Association, NFL Benefits Office, Avanir, Zinfandel, and BMS. Dr. Lyketsos has received honoraria or travel support from Pfizer, Forest, Glaxo-Smith-Kline, and Health Monitor. Dr. Samus received grant funding from the ASSOCIATED: Jewish Community Federation of Baltimore and the National Institute of Mental Health and National Institute on Aging (K01 MH085142).

Author Contributions: Black: conception and design, analysis and interpretation of data, drafting and revision of article for important intellectual content, final approval of version for publication. Johnston: conception and design, acquisition of data, revision of article for important intellectual content, final approval of version for publication. Morrison: acquisition of data, revision of article for important intellectual content, final approval of the version for publication. Rabin, Lyketsos, Samus: conception and design, revision of article for important intellectual content, final approval of version for publication.

Sponsor's Role: The sponsors had no role in the design, methods, subject recruitment, data collection, data analysis, or preparation of this article.

Ancillary