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OBJECTIVES: Vascular cognitive impairment is the second most common type of cognitive impairment. Care needs of community-dwelling people with vascular cognitive impairment and their caregivers have not been thoroughly studied. Therefore, we aimed to explore care needs of people with vascular cognitive impairment and their family caregivers. DESIGN: A qualitative interview study. SETTING AND PARTICIPANTS: Participants were purposefully sampled community-dwelling people with vascular cognitive impairment and their family caregivers. METHODS: Interviews were audiotaped and transcribed verbatim. Analysis and data collection followed an iterative process, until data saturation was achieved. We conducted 18 interviews (nine people with vascular cognitive impairment and nine caregivers), concerning 13 unique people with vascular cognitive impairment. We analyzed the data using inductive thematic analysis following the Braun & Clark method. The study was reported in accordance with the COREQ criteria. FINDINGS: Five themes were identified in the care needs reported by people with vascular cognitive impairment and family caregivers: (1) Specific information need with subtheme (1A) No memory problem, no dementia? (2) Being respected as a person, (3) Differing concerns about the future, (4) The roles of the caregiver and (5) Decisiveness from professional healthcare. CONCLUSIONS AND IMPLICATIONS: The care needs of people with vascular cognitive impairment and their caregivers were affected by (a lack of knowledge about) the characteristic symptoms of this condition. Participants equated cognitive impairment or dementia to memory loss ("Alzheimerization"), although memory loss was not their biggest challenge. People with vascular cognitive impairment and caregivers preferred resolute and decisive healthcare professionals. These professionals activate the person with vascular cognitive impairment who lacks initiative and diminishe role conflict of the caregiver. Care for people with vascular cognitive impairment and their caregivers could be improved by providing tailored information, promoting awareness of neuropsychiatric symptoms, particularly apathy, and by healthcare professionals providing more guidance in decision-making.
Subject(s)
Cognitive Dysfunction , Dementia , Humans , Dementia/psychology , Cognitive Dysfunction/psychology , Caregivers/psychology , Memory Disorders , Data Collection , Qualitative ResearchABSTRACT
INTRODUCTION: Computer tools based on artificial intelligence could aid clinicians in memory clinics by supporting diagnostic decision-making and communicating diagnosis and prognosis. We aimed to identify preferences of end-users, and barriers and facilitators for using computer tools in memory clinics. METHODS: Between July and October 2020, we invited European clinicians (n=109, age 45±10y; 47% female) to participate in an online questionnaire. A second questionnaire was sent to patients (n=50, age 73±8y, 34% female) with subjective cognitive complaints (SCD, n=21), mild cognitive impairment (MCI, n=16) and dementia (n=13) and care partners (n=46, 65±12y, 54% female). RESULTS: The vast majority (75%) of all participants positively valued the use of computer tools in memory clinics. Facilitating factors included user-friendliness and increased diagnostic accuracy. Barriers included (doubts relating) reliability and validity of the tool and loss of clinical autonomy. The participants believe that tools should be used in addition to the current working method and not as a replacement. DISCUSSION: Our results provide an important step in the iterative process of developing computer tools for memory clinics in co-creation with end-users and could guide successful implementation.
Subject(s)
Artificial Intelligence , Caregivers , Humans , Female , Aged , Aged, 80 and over , Male , Reproducibility of Results , Surveys and Questionnaires , ComputersABSTRACT
BACKGROUND: Computer tools based on artificial intelligence could aid clinicians in memory clinics in several ways, such as by supporting diagnostic decision-making, web-based cognitive testing, and the communication of diagnosis and prognosis. OBJECTIVE: This study aims to identify the preferences as well as the main barriers and facilitators related to using computer tools in memory clinics for all end users, that is, clinicians, patients, and care partners. METHODS: Between July and October 2020, we sent out invitations to a web-based survey to clinicians using the European Alzheimer's Disease Centers network and the Dutch Memory Clinic network, and 109 clinicians participated (mean age 45 years, SD 10; 53/109, 48.6% female). A second survey was created for patients and care partners. They were invited via Alzheimer Europe, Alzheimer's Society United Kingdom, Amsterdam Dementia Cohort, and Amsterdam Aging Cohort. A total of 50 patients with subjective cognitive decline, mild cognitive impairment, or dementia (mean age 73 years, SD 8; 17/34, 34% female) and 46 care partners (mean age 65 years, SD 12; 25/54, 54% female) participated in this survey. RESULTS: Most clinicians reported a willingness to use diagnostic (88/109, 80.7%) and prognostic (83/109, 76.1%) computer tools. User-friendliness (71/109, 65.1%); Likert scale mean 4.5, SD 0.7), and increasing diagnostic accuracy (76/109, 69.7%; mean 4.3, SD 0.7) were reported as the main factors stimulating the adoption of a tool. Tools should also save time and provide clear information on reliability and validity. Inadequate integration with electronic patient records (46/109, 42.2%; mean 3.8, SD 1.0) and fear of losing important clinical information (48/109, 44%; mean 3.7, SD 1.2) were most frequently indicated as barriers. Patients and care partners were equally positive about the use of computer tools by clinicians, both for diagnosis (69/96, 72%) and prognosis (73/96, 76%). In addition, most of them thought favorably regarding the possibility of using the tools themselves. CONCLUSIONS: This study showed that computer tools in memory clinics are positively valued by most end users. For further development and implementation, it is essential to overcome the technical and practical barriers of a tool while paying utmost attention to its reliability and validity.
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Background: The association between pain and dementia is complicated and may depend on underlying brain pathology. It was hypothesized that both medial temporal atrophy (MTA) and global cortical atrophy (GCA) predicted no/mild pain, while white matter hyperintensities (WMH) predicted moderate/severe pain. Objectives: To study the association between pain intensity and measures of brain pathology, more specifically MTA, GCA, and WMH. Methods: In total, 115 consecutive patients visiting an outpatient memory clinic were included. In total, diagnoses included dementia (N=70), mild cognitive impairment (N=30), and subjective cognitive impairment (N=15). Without administering stimuli, pain intensity was assessed with the Brief Pain Inventory. MTA, GCA, and WMH were measured with a MRI visual rating scale. Logistic regression analyses to examine the relationship between WMH, MTA, GCA, and self-reported pain intensity (no/mild pain versus moderate/severe pain) were adjusted for confounders. Results: Mean age of the patients was 81 years (IQR: 78-85, 53% female). Moderate/severe pain was reported by 23.5% and associated with greater WMH (OR =3.34, 95% CI =1.01-10.97, p=0.047), but not MTA or GCA. Conclusions: In contrast to the present results, earlier studies have reported either a positive or negative relationship between pain and brain volume. It is suggested that the presence of dementia may explain the absence of a relationship between pain and brain volume. WMH is positively related with pain in an older memory outpatient population. Considering the small sample size, our findings should be interpreted with caution. Hence, our conclusions are preliminary findings, warranting future replication.
