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Family Composition and Expressions of Family-Focused Care Needs at an Academic Memory Disorders Clinic

Family Composition and Expressions of Family-Focused Care Needs at an Academic Memory Disorders... Hindawi Publishing Corporation International Journal of Alzheimer’s Disease Volume 2013, Article ID 436271, 6 pages http://dx.doi.org/10.1155/2013/436271 Research Article Family Composition and Expressions of Family-Focused Care Needs at an Academic Memory Disorders Clinic 1,2 3 3,4 Brandalyn C. Riedel, Jamie K. Ducharme, and David S. Geldmacher Department of Gerontology, Virginia Commonwealth University, Richmond, VA 23298, USA Neuroscience Graduate Program, University of Southern California, Los Angeles, CA 90089, USA Department of Neurology, University of Virginia, Charlottesville, VA 22908, USA University of Alabama-Birmingham, Birmingham, AL 35294, USA Correspondence should be addressed to David S. Geldmacher; dgeldmacher@uab.edu Received 30 July 2013; Revised 26 September 2013; Accepted 29 September 2013 Academic Editor: Patrizia Mecocci Copyright © 2013 Brandalyn C. Riedel et al. This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. Objective. To understand who dementia patients identify as their family and how dementia aec ff ts family life. Background. Dementia care is oen ft delivered in family settings, so understanding the constituency and needs of the family unit involved in care is important for determining contributors to family quality of life. Design/Methods. Seventy-seven families receiving care at an academic dementia clinic completed questionnaires regarding the aec ff ted person and the family. Responses were categorized as focused on an individual’s needs or the family’s needs. Results. Respondents identified a mean of 3.77 family members involved in care. Spouse (80.5%), daughter (58.4%), son (46.8%), and stepchild or child-in-law (37.7%) were the most frequently listed family members. Questions regarding the effect of dementia-related changes in cognition and mood were most likely to elicit a family- focused response. Questionnaire items that inquired about specific medical questions and strategies to improve family function were least likely to elicit a family-focused response. Conclusions. Both caregivers and persons with dementia frequently provided family-focused responses, supporting the construct of dementia as an illness that aec ff ts life in the family unit. This finding reinforces the potential utility of family-centered quality of life measures in assessing treatment success for people with dementia. 1. Introduction individuals’ assessment of their QOL [5]. Concurrently, proxy’s attributions of the affected individual’s QOL are often Alzheimer’s disease (AD) and related dementias aeff ct an quite dieff rent from the affected person and rated signi-fi individuals’ quality of life (QOL) in profound ways. QOL cantly lower [6, 7]. These discrepancies may help explain has been identified as a primary goal of dementia treatment thelackofuniformly accepted QOLmeasure forstudies of [1, 2]. For instance, the International Working Group for the people with dementia. However, since both provide distinct Harmonization of Dementia Drug Guidelines recommended information, a combination of proxy and patient QOL ratings that QOLbeincludedasanoutcome measureindementia may be more appropriate [8]. clinical trials [3]. The value of QOL measurement lies in its Along with the importance of QOL measurement for ability to capture potential benefits and harms of treatment understanding the impact of the social, behavioral, and not detected by typical patient-oriented performance out- cognitive changes associated with dementia, an accurate comes, such as cognitive tests. assignment of QOL is also important from an economic Unfortunately, the neurological deficits associated with a perspective. Measures of QOL serve as the basis of the “cost utility” analyses used by healthcare payer agencies to dementing disease oeft n make measurement of patient QOL difficult. Anosognosia, an organically mediated unawareness determine economic aspects of treatment effectiveness. eTh of the impairments, is a frequent occurrence in the disease, core of this analysis is a unit known as “Quality Adjusted Life aeff cting up to 50% of individuals with mild to moderate AD Years” (QALYs). QALYs provide a single index that combines [4]. This lack of insight may limit the reliability of aeff cted survival estimates and health-related QOL data, resulting 2 International Journal of Alzheimer’s Disease in judgments about the relative eeff ctiveness of a treatment 2. Methods intervention. QOL survey responses from patients were used 2.1. Questionnaire Development. Basedonthe BeachCen- for estimation in 58% of QALY approaches reported in one terFQOLinstrumentand theauthors’prior work with study [9]. However, QALY estimates for dementia are subject families caring for dementia, the domains associated with to widely different interpretations, and the utility of such FQOL in dementia were defined as (1) family interactions, estimatesiscontroversial [10]. Valid measures of QOL in (2) direct care/activities of daily living support, (3) emo- dementia will be important for assessing the efficacy of future tional/behavioral well-being, (4) physical and cognitive well- disease modifying therapies for dementing illnesses like AD, being, and (5) disability-related support/medical care [16, because these agents are designed to slow progression without 18]. eTh domainswerethenusedtoconstruct aseriesof directly improving symptoms. Since, by definition, dementia open-ended questions focused on assessing the impact of diagnosis requires a loss of functional independence, treat- dementia on these areas. Developed by a neurologist (DG) ments that slow progress will prolong disability. This raises and neuropsychologist (JD), this format was chosen to allow significant problems for interpreting patient-centered QOL for flow of thought and feelings not traditionally captured as the basis of QALY calculations for such treatments. with quantitative methods. eTh person with dementia and a However, QOL assessment is also important from a family member were asked to complete separate but similar family systems perspective. Because a family unit functions questionnaires. Caregivers were allowed to assist the aeff cted as an interconnected whole, dysfunction or illness in one person in completing the form, but were instructed to ensure family member aeff cts other family members [ 11]. More than that responses reflected the “aeff cted person’s thoughts.” eTh 70% of individuals with AD and other dementias receive care caregiver questionnaire form is depicted in Table 1. in a family setting; caring for someone with dementia leads to caregiver burden, adverse effects on family interactions, changes in family roles, and communication difficulties 2.2. Data Collection. Dyads, consisting of care recipients [12, 13]. The Family Caregiving Alliance has consequently with dementia and family caregivers, were recruited for suggested that quality of care assessments should embrace completion of the FQOL questionnaire during a visit to an a family-centered perspective [14]. eTh refore, development outpatient, interdisciplinary dementia care clinic located at a of a family quality of life (FQOL) measure is pertinent for university medical center. All patient participants met DSM- providing a more complete basis for QALY estimates of III diagnostic criteria for dementia, as recommended by the potential disease modifying therapies for dementia, as well American Academy of Neurology guidelines for dementia as for clarifying the care needs of people with dementia and diagnosis [18]. While the specific cause of dementia was their families. not assessed for the purpose of the study, AD is the most One difficulty in assessing the impact of dementia on fam- common diagnosis among patients in the enrolling clinic, ily function and well-being lies in determining an adequate followed by a minority of patients who present with other operational definition of FQOL that encompasses individual causes of dementia such as dementia with Lewy bodies, needs within a family unit. A concept primarily studied in and vascular dementia. Dementia severity, as assigned by the eld fi of developmental and intellectual disabilities, FQOL clinicians providing care, was generally mild to moderate. has been defined as the “interaction and reverberation of Becausepatient responseswererequired, personswithsevere individual members as they produce the aggregate of family dementia were likely not able to participate. For the purposes quality of life” [15]. In operational terms, the Beach Center of this study “a family” was identified by the patient per FQOL Scale [16], ameasure developedtoassessFQOL specific guidelines to include one or more persons with whom among families of children with developmental intellectual they share emotional closeness and the dementia experience, disabilities, conceptualizes FQOL as the positive and negative whether or not they were related by blood or marriage. impacts “experienced by families as a result of supports and The study was approved by an internal Institutional services for themselves and/or their children with disabili- Review Board. Since the study was deemed to involve min- ties.” This concept is then used to measure the effectiveness imal risk, participants were not required to sign an informed of care services [16]. consent document. However, before data were collected, the A previous study identified that the domains of Beach caregiver/patient dyads were informed of the purpose of the Center FQOL Scale items could be successfully adapted to study and informed that each would be asked to complete address dementia-related changes in family interactions [17]. a 7-item open-ended questionnaire. All participants were eTh specicg fi oals forthe currentstudy were to further informed of their right to refuse participation or withdraw explore the potential utility of the FQOL construct in guiding from thestudy at anytimewithout consequencetotheir dementia care, and to gain insight regarding the following health care. Caregivers were invited to assist the patient in questions related to FQOL. answering the questions as needed. First, the person with dementia was asked to list family members who “think of (1) Who do dementia patients consider to be family? themselves as part of your family (even though they may or may not be related by blood or marriage) and who (2) Do family members report ways that dementia aeff cts support and care for you on a regular basis.” eTh participants their FQOL? were then askedtoanswerthe questionsillustrated in (3) What are the common FQOL-related needs that Table 1. Questionnaires were completed in examination or families identify in a healthcare setting? consultation rooms that allowed for privacy. All identifying International Journal of Alzheimer’s Disease 3 Table 1: Study questions (worded differently for the patient versus Table 2: Five most frequently reported family relationships reported caregiver versions). by respondents with dementia. (1) Howhaveyourmemoryand thinking problems aeff ctedyour Relationship Frequency (%) interactions with your family or other groups of people? Spouse 80.5 (2) What kinds of help do family members provide with every day Daughter 58.4 activities (remembering medicines, shopping, paying bills, Son 46.8 cooking, etc.) or personal care (like bathing, eating, etc.)? Step-child or child-in-law 37.7 (3) How is your mood? How have you been feeling emotionally? Grandchild 22.1 How does your mood affect your interactions with your family? (4)How areyou feelingphysically? Howdoesyourphysical well-being aec ff t your interactions with your family? (5) How is your thinking? Your memory? How have changes in answers. The frequency distribution of family member types your thinking/memory aeff cted your interactions with your is illustrated in Table 2. family? (6) What questions are you hoping to have us answer today 3.3. Family-Focused Responses. All analyzed dyads provided regarding your care? at least two family-focused responses in completion of (7) Are there ways that we can help improve your family’s their questionnaires. This included responses that specifically functioning as a whole? mentionedmultiplefamilymembers,aswellasresponsesthat included plural terms such as, “we,” “they,” or “our/my family.” Examples of family-focused responses include “We will have information was removed from study material before analysis to repeat things. Overall, we are positive and supportive and to assure the participants’ anonymity and cond fi entiality. are here to help and love our family member” and “We as a family simply repeat, re-word something he is having trouble with. Sometimes we just let it go when we know he has not 2.3. Data Analysis. Of the 81 dyads that completed question- “gotten” it.” Responses were considered to be individually naires, 77 were included in the analysis. Four dyads were focused when they (1) reported on changes in cognitive excluded because of insufficient data, defined as no response domains, such as memory and thinking, without mentioning to>50% of questions on both caregiver and patient forms. the impact of those changes on others, or (2) indicated that Notably, all four of the removed dyads involved a complete only the patient or caregiver was being mentioned, (e.g., lack of response from either the patient or the caregiver. “Patient says she does not like being different from the way Only matched pairs of patients and caregivers in which both shewas before theonset.” and“What canIdo to improvemy responded to>50% of their respective question sets were used memory?”). Individually, only four of the patients and one for analysis. caregiver who completed the questionnaires did not provide Qualitative methods of data analysis were used. A neu- at least one family-focused response. Frequencies of family- ropsychologist (JD) and a graduate student in gerontology focused responses are shown in Table 3. (BR) independently developed initial sets of categorization Patients were more likely than caregivers to provide codes, which they used to separately analyze ten test cases. family-focused responsesonfourofthe sevenquestionnaire They then jointly reviewed their codes to determine agree- items (Items 1, 3, 4, and 5). Caregivers more frequently ment andcreateafinal,focused,codingscheme[ 19]. The provided family-centered responses on two of the seven items nfi al scheme categorizedresponsetypes into threecategories (Items 6 and 7). One item had identical proportions of family- (1) response focused on an individual’s needs, (2) response focused responses from both patients and caregivers. focused on family needs, or (3) neither. SPSS for Windows Predictably, questionnaire Item 1, which inquired about version 12.0 was used to compute frequencies for types of how the presence of dementia symptoms aeff cted family responses and to interpret demographic information. interactions, was the most likely to elicit a family-focused response, from both patients (78%) and caregivers (70%). An 3. Results example response to this question from a caregiver was “My wife keeps to herself a lot. All our kids know the situation, but 3.1. Demographics. The mean age of patients was 72.1 years, do not really want to accept the outcome.” and 53% were men. For the caregiver respondents, the mean Item 5, which inquired about self-perceptions of thinking agewas 62.1,and 72%werewomen. and memory, and addressed family interactions secondarily, elicited a family-focused response from 48% of patients and 3.2. Den fi ing Family. The mean number of reported family 32% of caregivers. An example of a caregiver’s family-focused members was 3.77 (SD = 2.77). eTh majority of patients response to this question was “Poor short-term memory and included their spouse (80.5%) in the listing of their family repetitions limit enjoyability of discussions and family meals members, followed by a daughter (58.4%), a son (46.8%), a together. Patient has developed confabulations, in unkind step-child or child-in-law (37.7%), and a grandchild (22.1%). ways, that disturb more distant family members.” Otherpossiblefamilymembers,suchasafriend,neighbor, Item 3 inquired about changes in mood and emotions, or caregiver, were listed fewer than 10 percent of respondents and the effect on family interactions. It was as likely to elicit 4 International Journal of Alzheimer’s Disease Table 3: Percent of family focused responses by question (𝑛=77 ). Topic Patient respondent Caregiver respondent (1) Effect of dementia symptoms on interactions 78 70 (2)Helpwithactivitiesand personal care 14 14 (3) Mood and emotion 48 39 (4) Physical well-being 34 23 (5) Cognition 48 32 (6) Questions regarding care 6 17 (7) Improving family function 14 26 a family-focused response from the patients as the query a mean of 3.77 members. This supports the potential use- on cognitiveabilities in Item5(48%) andwas thesecond fulness of assessing FQOL in community-dwelling people most likely question to elicit a family-focused response with dementia instead of the more typical separate patient from caregivers (39%). Examples of family-focused responses and single-caregiver measures of individual QOL. On many to this Item included (From patient) “Fluctuating between questionnaires, issues related to the dynamics of family-based normal and a little nervous. Makes kids concerned. Not as care emerged (e.g., “Very difficult to communicate with my able to do things as I generally am. Feel less secure about family, and this is depressing to us all”) indicating that solely my own input;” (From family member) it included “eTh inquiring about individual QOL from a caregiver or patient limited communications are hard to deal with. eTh lack of perspective alone fails to assess important dynamics within a initiative andempathy makesussad,feeling like it is aone- family unit. way relationship.” The second study question investigated how families Item 4 inquired about changes in physical functioning report the eeff cts of dementia on domains associated with and its effects on family interactions. It elicited family- FQOL. Our earlier study revealed that family interactions focused responses from 34% of patients and 23% of care- were articulated infrequently in a medical care setting [17], givers. An example of a patient response to this question was suggesting that important aspects of family well-being may “Energy level has dropped, so not able to do many things. not be addressed prospectively by families seeking medi- Physical part has minor effect on family interactions.” cally oriented dementia care or by health care providers. Items inquiring about ADL/IADL assistance (Item 2) To compensate for this problem, the current study used andwhatquestions thepatients/caregivers hopedtohave questions designed to identify ways that dementia impacts answered during their visit (Item 6) elicited family-focused family interactions in specified domains. Results indicated responses in only 6–14% of patients and 14–17% of caregivers. a high frequency of family-focused responses for items An example of a patient family-focused response for question regarding thinking and memory. er Th e were fewer family- two was “Husband—meds. Shopping—daughter and step- centered responses to queries about topics to be addressed daughter. Paying bills—stepdaughter. Cooking—husband. at the medical visit or on how family functioning could be Personal care—myself.” Examples of caregiver responses for improved. Persons with dementia seemed at a particular loss Item 6 include “If there is any way we can communicate other in expressing questions about how their family’s function- than speech—sign language, and so forth.” and “Anything we ing could be improved, with over half (52%) leaving the can do differently that may stimulate brain more to maybe question unanswered. While it is possible that both patients keep mind from completely going.” and caregivers did not feel their family situation needed Item 7 queried whether respondents saw ways for the any improvement, there is a substantial likelihood that the clinic staff to help improve family function. Only 14% observed patterns reflect a combination of ascertainment bias of patients and 26% of caregivers responded with family- in our specialty clinic population, inadequate study instru- focused responses that included tangible suggestions such as mentation, and the study’s physical and temporal location in emotional support or increased knowledge of the disease. An an obvious medical clinic setting. example of a patient response to this question was “Better eTh n fi al question the study sought to assess was what understanding of the disease process.” An example of a broader needs patients and families commonly identified response from a caregiver was “Respite care—I am drowning. in a dementia-specialty healthcare setting. o Th ugh 26% of No help other than during the day while I am at work.” Over caregivers provided family-focused responses to the item 60% of family-focused responses indicated family function querying how the clinic staff could help improve family did not need improvement. function, few clear themes emerged from these questions. Responses were most likely to raise questions about care activities unique to their own patient and family. 4. Discussion eTh re are study limitations that reflect larger problems The purpose of this exploratory study was to inform three in dementia care research. The majority of the study sample key questions. eTh rfi st asked about whom dementia patients was Caucasian and English speaking, from a geographically consider to be family. For our respondents “family” included restricted, mostly rural to suburban area in the Eastern US. International Journal of Alzheimer’s Disease 5 Participants had physical and financial access to expert care From the public health perspective, meaningful measures of and literacy levels sufficient to read and provide written FQOL might allow refinements in “cost utility” analysis and responses to the questions. Our questionnaire was designed resource utilization estimates to account for the eeff ct of the with this restricted sociocultural population in mind. Differ- disease on the family unit, rather than the aeff cted person in ent phrasing and content for the questions would likely be isolation. At an individual level, assessing the determinants of needed to best address dementia care needs in other loca- FQOL may allow healthcare practitioners to be more eeff ctive tions. These issues detract from the ability to generalize our in predicting the resources that families need to best support findings to individuals from other cultures and backgrounds affected persons and to optimize family function and well- and point to the need for further outreach to minority and being. underprivileged populations regarding the eeff cts of demen- tia and its associated care on family function. Additionally, Conflict of Interests the lack of randomization of study participants inherent in qualitative research further detracts from generalizability of eTh authors declare that there is no conflict of interests these ndin fi gs. regarding the publication of this paper. Although the survey used rst fi -person language to query the patient about their dementia care concerns, it was evident References that family members frequently completed the responses sur- veyonthepatient’sbehalf.Thiswasapracticalnecessityinthe [1] C. P. Ferri, M. Prince, C. Brayne et al., “Global prevalence of care setting because of the nature and severity of the patient’s dementia: a Delphi consensus study,” The Lancet ,vol.366,no. cognitive decfi its. However, this limits the reliability of the 9503, pp. 2112–2117, 2005. data. It is also unclear as to how responses to these questions [2] P. J. Whitehouse and P. V. Rabins, “Quality of life and dementia,” might change over time or in response to interventions. Given Alzheimer Disease and Associated Disorders,vol.6,no. 3, pp. that dementia severity was not assessed as a variable in our 135–137, 1992. study, it is possible that it would not generalize to individuals [3] J. L. Mack and P. J. Whitehouse, “Quality of life in dementia: in earlier or more severe stages of dementia. Previous studies state of the art-report of the international working group for have reported that QOL may be independent of cognitive harmonization of dementia drug guidelines and the Alzheimer’s function, supporting the potential value of inquiry on aspects society satellite meeting,” Alzheimer Disease and Associated Disorders,vol.15, no.2,pp. 69–71, 2001. FQOL in all stages of the disease [20]. However, behavioral symptoms, which have a major impact on caregiver well- [4] S. E. Starkstein, R. Jorge, R. Mizrahi, and R. G. Robinson, “A diagnostic formulation for anosognosia in Alzheimer’s disease,” being and QOL, were probably not sufficiently addressed Journal of Neurology, Neurosurgery and Psychiatry,vol.77, no.6, in our study. eTh phrasing of questionnaire Item 3, which pp.719–725,2006. was intended to assess these symptoms, focused on “mood,” [5] R.E.Ready andB.R.Ott,“Qualityoflifemeasuresfor but this may not have triggered responses regarding other dementia,” Health and Quality of Life Outcomes,vol.1,article behavioral and psychiatric symptoms of dementia. Future 11, 2003. studies will be needed to assess the impact of a broader [6] L. Jo¨nsson,N.Andreasen,L.Kilanderetal.,“Patient- and spectrum behavioral and psychiatric symptoms, especially proxy-reported utility in Alzheimer disease using the Euro- agitation and sleep disturbances, on FQOL. QoL,” Alzheimer Disease and Associated Disorders,vol.20, no. The use of a brief, easy to administer, open-ended ques- 1, pp.49–55,2006. tionnaire in this study was central to our examination of the [7] J.H.Karlawish,A.Zbrozek,B.Kinosianetal.,“Caregivers’ elements that contribute to FQOL in dementia. This approach assessments of preference-based quality of life in Alzheimer’s permitted volunteers to provide subjective views and experi- disease,” Alzheimer’s and Dementia,vol.4,no. 3, pp.203–211, ences of the effect of dementia on FQOL. Future studies may be best served by asking additional domain-specific questions [8] G. Naglie, “Quality of life in dementia,” Canadian Journal of and inquiring about the significance of each. Additionally, Neurological Sciences, vol. 34, no. 1, pp. S57–S61, 2007. measuring the frequency of family-focused responses will [9] P.A.Scuaffh m, J. A. Whitty,A.Mitchell, andR.Viney, likely not serve as a complete indication of how dementia “eTh use of QALY weights for QALY calculations: a review aeff cts the family. Along these lines, future studies may need of industry submissions requesting listing on the Australian to assess what the family has done to cope with changes in Pharmaceutical Benefits Scheme 2002-4,” PharmacoEconomics, family function that result from dementia symptoms. It is vol. 26, no. 4, pp. 297–310, 2008. likely that many variables, such as those that reflect coping [10] P. J. Neumann, “Health utilities in Alzheimer’s disease and skills, social resources, caregiver and patient personality, and implications for cost-effectiveness analysis,” PharmacoEco- overall resilience, will have different effects from one family nomics,vol.23, no.6,pp. 537–541, 2005. to another. [11] M. M. Friedman, V. R. Bowden, and E. G. 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Family Composition and Expressions of Family-Focused Care Needs at an Academic Memory Disorders Clinic

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Copyright © 2013 Brandalyn C. Riedel et al. This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
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Hindawi Publishing Corporation International Journal of Alzheimer’s Disease Volume 2013, Article ID 436271, 6 pages http://dx.doi.org/10.1155/2013/436271 Research Article Family Composition and Expressions of Family-Focused Care Needs at an Academic Memory Disorders Clinic 1,2 3 3,4 Brandalyn C. Riedel, Jamie K. Ducharme, and David S. Geldmacher Department of Gerontology, Virginia Commonwealth University, Richmond, VA 23298, USA Neuroscience Graduate Program, University of Southern California, Los Angeles, CA 90089, USA Department of Neurology, University of Virginia, Charlottesville, VA 22908, USA University of Alabama-Birmingham, Birmingham, AL 35294, USA Correspondence should be addressed to David S. Geldmacher; dgeldmacher@uab.edu Received 30 July 2013; Revised 26 September 2013; Accepted 29 September 2013 Academic Editor: Patrizia Mecocci Copyright © 2013 Brandalyn C. Riedel et al. This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. Objective. To understand who dementia patients identify as their family and how dementia aec ff ts family life. Background. Dementia care is oen ft delivered in family settings, so understanding the constituency and needs of the family unit involved in care is important for determining contributors to family quality of life. Design/Methods. Seventy-seven families receiving care at an academic dementia clinic completed questionnaires regarding the aec ff ted person and the family. Responses were categorized as focused on an individual’s needs or the family’s needs. Results. Respondents identified a mean of 3.77 family members involved in care. Spouse (80.5%), daughter (58.4%), son (46.8%), and stepchild or child-in-law (37.7%) were the most frequently listed family members. Questions regarding the effect of dementia-related changes in cognition and mood were most likely to elicit a family- focused response. Questionnaire items that inquired about specific medical questions and strategies to improve family function were least likely to elicit a family-focused response. Conclusions. Both caregivers and persons with dementia frequently provided family-focused responses, supporting the construct of dementia as an illness that aec ff ts life in the family unit. This finding reinforces the potential utility of family-centered quality of life measures in assessing treatment success for people with dementia. 1. Introduction individuals’ assessment of their QOL [5]. Concurrently, proxy’s attributions of the affected individual’s QOL are often Alzheimer’s disease (AD) and related dementias aeff ct an quite dieff rent from the affected person and rated signi-fi individuals’ quality of life (QOL) in profound ways. QOL cantly lower [6, 7]. These discrepancies may help explain has been identified as a primary goal of dementia treatment thelackofuniformly accepted QOLmeasure forstudies of [1, 2]. For instance, the International Working Group for the people with dementia. However, since both provide distinct Harmonization of Dementia Drug Guidelines recommended information, a combination of proxy and patient QOL ratings that QOLbeincludedasanoutcome measureindementia may be more appropriate [8]. clinical trials [3]. The value of QOL measurement lies in its Along with the importance of QOL measurement for ability to capture potential benefits and harms of treatment understanding the impact of the social, behavioral, and not detected by typical patient-oriented performance out- cognitive changes associated with dementia, an accurate comes, such as cognitive tests. assignment of QOL is also important from an economic Unfortunately, the neurological deficits associated with a perspective. Measures of QOL serve as the basis of the “cost utility” analyses used by healthcare payer agencies to dementing disease oeft n make measurement of patient QOL difficult. Anosognosia, an organically mediated unawareness determine economic aspects of treatment effectiveness. eTh of the impairments, is a frequent occurrence in the disease, core of this analysis is a unit known as “Quality Adjusted Life aeff cting up to 50% of individuals with mild to moderate AD Years” (QALYs). QALYs provide a single index that combines [4]. This lack of insight may limit the reliability of aeff cted survival estimates and health-related QOL data, resulting 2 International Journal of Alzheimer’s Disease in judgments about the relative eeff ctiveness of a treatment 2. Methods intervention. QOL survey responses from patients were used 2.1. Questionnaire Development. Basedonthe BeachCen- for estimation in 58% of QALY approaches reported in one terFQOLinstrumentand theauthors’prior work with study [9]. However, QALY estimates for dementia are subject families caring for dementia, the domains associated with to widely different interpretations, and the utility of such FQOL in dementia were defined as (1) family interactions, estimatesiscontroversial [10]. Valid measures of QOL in (2) direct care/activities of daily living support, (3) emo- dementia will be important for assessing the efficacy of future tional/behavioral well-being, (4) physical and cognitive well- disease modifying therapies for dementing illnesses like AD, being, and (5) disability-related support/medical care [16, because these agents are designed to slow progression without 18]. eTh domainswerethenusedtoconstruct aseriesof directly improving symptoms. Since, by definition, dementia open-ended questions focused on assessing the impact of diagnosis requires a loss of functional independence, treat- dementia on these areas. Developed by a neurologist (DG) ments that slow progress will prolong disability. This raises and neuropsychologist (JD), this format was chosen to allow significant problems for interpreting patient-centered QOL for flow of thought and feelings not traditionally captured as the basis of QALY calculations for such treatments. with quantitative methods. eTh person with dementia and a However, QOL assessment is also important from a family member were asked to complete separate but similar family systems perspective. Because a family unit functions questionnaires. Caregivers were allowed to assist the aeff cted as an interconnected whole, dysfunction or illness in one person in completing the form, but were instructed to ensure family member aeff cts other family members [ 11]. More than that responses reflected the “aeff cted person’s thoughts.” eTh 70% of individuals with AD and other dementias receive care caregiver questionnaire form is depicted in Table 1. in a family setting; caring for someone with dementia leads to caregiver burden, adverse effects on family interactions, changes in family roles, and communication difficulties 2.2. Data Collection. Dyads, consisting of care recipients [12, 13]. The Family Caregiving Alliance has consequently with dementia and family caregivers, were recruited for suggested that quality of care assessments should embrace completion of the FQOL questionnaire during a visit to an a family-centered perspective [14]. eTh refore, development outpatient, interdisciplinary dementia care clinic located at a of a family quality of life (FQOL) measure is pertinent for university medical center. All patient participants met DSM- providing a more complete basis for QALY estimates of III diagnostic criteria for dementia, as recommended by the potential disease modifying therapies for dementia, as well American Academy of Neurology guidelines for dementia as for clarifying the care needs of people with dementia and diagnosis [18]. While the specific cause of dementia was their families. not assessed for the purpose of the study, AD is the most One difficulty in assessing the impact of dementia on fam- common diagnosis among patients in the enrolling clinic, ily function and well-being lies in determining an adequate followed by a minority of patients who present with other operational definition of FQOL that encompasses individual causes of dementia such as dementia with Lewy bodies, needs within a family unit. A concept primarily studied in and vascular dementia. Dementia severity, as assigned by the eld fi of developmental and intellectual disabilities, FQOL clinicians providing care, was generally mild to moderate. has been defined as the “interaction and reverberation of Becausepatient responseswererequired, personswithsevere individual members as they produce the aggregate of family dementia were likely not able to participate. For the purposes quality of life” [15]. In operational terms, the Beach Center of this study “a family” was identified by the patient per FQOL Scale [16], ameasure developedtoassessFQOL specific guidelines to include one or more persons with whom among families of children with developmental intellectual they share emotional closeness and the dementia experience, disabilities, conceptualizes FQOL as the positive and negative whether or not they were related by blood or marriage. impacts “experienced by families as a result of supports and The study was approved by an internal Institutional services for themselves and/or their children with disabili- Review Board. Since the study was deemed to involve min- ties.” This concept is then used to measure the effectiveness imal risk, participants were not required to sign an informed of care services [16]. consent document. However, before data were collected, the A previous study identified that the domains of Beach caregiver/patient dyads were informed of the purpose of the Center FQOL Scale items could be successfully adapted to study and informed that each would be asked to complete address dementia-related changes in family interactions [17]. a 7-item open-ended questionnaire. All participants were eTh specicg fi oals forthe currentstudy were to further informed of their right to refuse participation or withdraw explore the potential utility of the FQOL construct in guiding from thestudy at anytimewithout consequencetotheir dementia care, and to gain insight regarding the following health care. Caregivers were invited to assist the patient in questions related to FQOL. answering the questions as needed. First, the person with dementia was asked to list family members who “think of (1) Who do dementia patients consider to be family? themselves as part of your family (even though they may or may not be related by blood or marriage) and who (2) Do family members report ways that dementia aeff cts support and care for you on a regular basis.” eTh participants their FQOL? were then askedtoanswerthe questionsillustrated in (3) What are the common FQOL-related needs that Table 1. Questionnaires were completed in examination or families identify in a healthcare setting? consultation rooms that allowed for privacy. All identifying International Journal of Alzheimer’s Disease 3 Table 1: Study questions (worded differently for the patient versus Table 2: Five most frequently reported family relationships reported caregiver versions). by respondents with dementia. (1) Howhaveyourmemoryand thinking problems aeff ctedyour Relationship Frequency (%) interactions with your family or other groups of people? Spouse 80.5 (2) What kinds of help do family members provide with every day Daughter 58.4 activities (remembering medicines, shopping, paying bills, Son 46.8 cooking, etc.) or personal care (like bathing, eating, etc.)? Step-child or child-in-law 37.7 (3) How is your mood? How have you been feeling emotionally? Grandchild 22.1 How does your mood affect your interactions with your family? (4)How areyou feelingphysically? Howdoesyourphysical well-being aec ff t your interactions with your family? (5) How is your thinking? Your memory? How have changes in answers. The frequency distribution of family member types your thinking/memory aeff cted your interactions with your is illustrated in Table 2. family? (6) What questions are you hoping to have us answer today 3.3. Family-Focused Responses. All analyzed dyads provided regarding your care? at least two family-focused responses in completion of (7) Are there ways that we can help improve your family’s their questionnaires. This included responses that specifically functioning as a whole? mentionedmultiplefamilymembers,aswellasresponsesthat included plural terms such as, “we,” “they,” or “our/my family.” Examples of family-focused responses include “We will have information was removed from study material before analysis to repeat things. Overall, we are positive and supportive and to assure the participants’ anonymity and cond fi entiality. are here to help and love our family member” and “We as a family simply repeat, re-word something he is having trouble with. Sometimes we just let it go when we know he has not 2.3. Data Analysis. Of the 81 dyads that completed question- “gotten” it.” Responses were considered to be individually naires, 77 were included in the analysis. Four dyads were focused when they (1) reported on changes in cognitive excluded because of insufficient data, defined as no response domains, such as memory and thinking, without mentioning to>50% of questions on both caregiver and patient forms. the impact of those changes on others, or (2) indicated that Notably, all four of the removed dyads involved a complete only the patient or caregiver was being mentioned, (e.g., lack of response from either the patient or the caregiver. “Patient says she does not like being different from the way Only matched pairs of patients and caregivers in which both shewas before theonset.” and“What canIdo to improvemy responded to>50% of their respective question sets were used memory?”). Individually, only four of the patients and one for analysis. caregiver who completed the questionnaires did not provide Qualitative methods of data analysis were used. A neu- at least one family-focused response. Frequencies of family- ropsychologist (JD) and a graduate student in gerontology focused responses are shown in Table 3. (BR) independently developed initial sets of categorization Patients were more likely than caregivers to provide codes, which they used to separately analyze ten test cases. family-focused responsesonfourofthe sevenquestionnaire They then jointly reviewed their codes to determine agree- items (Items 1, 3, 4, and 5). Caregivers more frequently ment andcreateafinal,focused,codingscheme[ 19]. The provided family-centered responses on two of the seven items nfi al scheme categorizedresponsetypes into threecategories (Items 6 and 7). One item had identical proportions of family- (1) response focused on an individual’s needs, (2) response focused responses from both patients and caregivers. focused on family needs, or (3) neither. SPSS for Windows Predictably, questionnaire Item 1, which inquired about version 12.0 was used to compute frequencies for types of how the presence of dementia symptoms aeff cted family responses and to interpret demographic information. interactions, was the most likely to elicit a family-focused response, from both patients (78%) and caregivers (70%). An 3. Results example response to this question from a caregiver was “My wife keeps to herself a lot. All our kids know the situation, but 3.1. Demographics. The mean age of patients was 72.1 years, do not really want to accept the outcome.” and 53% were men. For the caregiver respondents, the mean Item 5, which inquired about self-perceptions of thinking agewas 62.1,and 72%werewomen. and memory, and addressed family interactions secondarily, elicited a family-focused response from 48% of patients and 3.2. Den fi ing Family. The mean number of reported family 32% of caregivers. An example of a caregiver’s family-focused members was 3.77 (SD = 2.77). eTh majority of patients response to this question was “Poor short-term memory and included their spouse (80.5%) in the listing of their family repetitions limit enjoyability of discussions and family meals members, followed by a daughter (58.4%), a son (46.8%), a together. Patient has developed confabulations, in unkind step-child or child-in-law (37.7%), and a grandchild (22.1%). ways, that disturb more distant family members.” Otherpossiblefamilymembers,suchasafriend,neighbor, Item 3 inquired about changes in mood and emotions, or caregiver, were listed fewer than 10 percent of respondents and the effect on family interactions. It was as likely to elicit 4 International Journal of Alzheimer’s Disease Table 3: Percent of family focused responses by question (𝑛=77 ). Topic Patient respondent Caregiver respondent (1) Effect of dementia symptoms on interactions 78 70 (2)Helpwithactivitiesand personal care 14 14 (3) Mood and emotion 48 39 (4) Physical well-being 34 23 (5) Cognition 48 32 (6) Questions regarding care 6 17 (7) Improving family function 14 26 a family-focused response from the patients as the query a mean of 3.77 members. This supports the potential use- on cognitiveabilities in Item5(48%) andwas thesecond fulness of assessing FQOL in community-dwelling people most likely question to elicit a family-focused response with dementia instead of the more typical separate patient from caregivers (39%). Examples of family-focused responses and single-caregiver measures of individual QOL. On many to this Item included (From patient) “Fluctuating between questionnaires, issues related to the dynamics of family-based normal and a little nervous. Makes kids concerned. Not as care emerged (e.g., “Very difficult to communicate with my able to do things as I generally am. Feel less secure about family, and this is depressing to us all”) indicating that solely my own input;” (From family member) it included “eTh inquiring about individual QOL from a caregiver or patient limited communications are hard to deal with. eTh lack of perspective alone fails to assess important dynamics within a initiative andempathy makesussad,feeling like it is aone- family unit. way relationship.” The second study question investigated how families Item 4 inquired about changes in physical functioning report the eeff cts of dementia on domains associated with and its effects on family interactions. It elicited family- FQOL. Our earlier study revealed that family interactions focused responses from 34% of patients and 23% of care- were articulated infrequently in a medical care setting [17], givers. An example of a patient response to this question was suggesting that important aspects of family well-being may “Energy level has dropped, so not able to do many things. not be addressed prospectively by families seeking medi- Physical part has minor effect on family interactions.” cally oriented dementia care or by health care providers. Items inquiring about ADL/IADL assistance (Item 2) To compensate for this problem, the current study used andwhatquestions thepatients/caregivers hopedtohave questions designed to identify ways that dementia impacts answered during their visit (Item 6) elicited family-focused family interactions in specified domains. Results indicated responses in only 6–14% of patients and 14–17% of caregivers. a high frequency of family-focused responses for items An example of a patient family-focused response for question regarding thinking and memory. er Th e were fewer family- two was “Husband—meds. Shopping—daughter and step- centered responses to queries about topics to be addressed daughter. Paying bills—stepdaughter. Cooking—husband. at the medical visit or on how family functioning could be Personal care—myself.” Examples of caregiver responses for improved. Persons with dementia seemed at a particular loss Item 6 include “If there is any way we can communicate other in expressing questions about how their family’s function- than speech—sign language, and so forth.” and “Anything we ing could be improved, with over half (52%) leaving the can do differently that may stimulate brain more to maybe question unanswered. While it is possible that both patients keep mind from completely going.” and caregivers did not feel their family situation needed Item 7 queried whether respondents saw ways for the any improvement, there is a substantial likelihood that the clinic staff to help improve family function. Only 14% observed patterns reflect a combination of ascertainment bias of patients and 26% of caregivers responded with family- in our specialty clinic population, inadequate study instru- focused responses that included tangible suggestions such as mentation, and the study’s physical and temporal location in emotional support or increased knowledge of the disease. An an obvious medical clinic setting. example of a patient response to this question was “Better eTh n fi al question the study sought to assess was what understanding of the disease process.” An example of a broader needs patients and families commonly identified response from a caregiver was “Respite care—I am drowning. in a dementia-specialty healthcare setting. o Th ugh 26% of No help other than during the day while I am at work.” Over caregivers provided family-focused responses to the item 60% of family-focused responses indicated family function querying how the clinic staff could help improve family did not need improvement. function, few clear themes emerged from these questions. Responses were most likely to raise questions about care activities unique to their own patient and family. 4. Discussion eTh re are study limitations that reflect larger problems The purpose of this exploratory study was to inform three in dementia care research. The majority of the study sample key questions. eTh rfi st asked about whom dementia patients was Caucasian and English speaking, from a geographically consider to be family. For our respondents “family” included restricted, mostly rural to suburban area in the Eastern US. International Journal of Alzheimer’s Disease 5 Participants had physical and financial access to expert care From the public health perspective, meaningful measures of and literacy levels sufficient to read and provide written FQOL might allow refinements in “cost utility” analysis and responses to the questions. Our questionnaire was designed resource utilization estimates to account for the eeff ct of the with this restricted sociocultural population in mind. Differ- disease on the family unit, rather than the aeff cted person in ent phrasing and content for the questions would likely be isolation. At an individual level, assessing the determinants of needed to best address dementia care needs in other loca- FQOL may allow healthcare practitioners to be more eeff ctive tions. These issues detract from the ability to generalize our in predicting the resources that families need to best support findings to individuals from other cultures and backgrounds affected persons and to optimize family function and well- and point to the need for further outreach to minority and being. underprivileged populations regarding the eeff cts of demen- tia and its associated care on family function. Additionally, Conflict of Interests the lack of randomization of study participants inherent in qualitative research further detracts from generalizability of eTh authors declare that there is no conflict of interests these ndin fi gs. regarding the publication of this paper. 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