A Multidimensional, Person-Centered Framework for Functional Assessment in Dementia: Insights from the ‘What’, ‘How’, ‘To Whom’, and ‘How Much’ Questions

Article type: Research Article

Authors: Slachevsky, Andrea^{a; b; c; d; *} | Grandi, Fabrissio^{a; e} | Thumala, Daniela^{a; f} | Baez, Sandra^{g; h} | Santamaria-García, Hernando^{i; j} | Schmitter-Edgecombe, Maureen^k | Parra, Mario A.^{l; *}

Affiliations: [a] Gerosciences Center for Brain Health and Metabolism (GERO), Santiago, Chile | [b] Memory and Neuropsychiatric Center (CMYN) Neurology Department, Hospital del Salvador & Faculty of Medicine, University of Chile, Santiago, Chile | [c] Physiopathology Department – ICBM, Neuroscience and East Neuroscience Departments, Faculty of Medicine, Neuropsychology and Clinical Neuroscience Laboratory (LANNEC), University of Chile, Providencia, Santiago, Chile | [d] Servicio de Neurología, Departamento de Medicina, Clínica Alemana-Universidad del Desarrollo, Santiago, Chile | [e] School of Psychology, Universidad de los Andes, Santiago, Chile | [f] Psychology Department, Faculty of Social Sciences, Universidad de Chile, Santiago, Chile | [g] Universidad de los Andes, Bogotá, Colombia | [h] Atlantic Fellow for Equity in Brain Health at the Global Brain Health Institute (GBHI), Trinity College Dublin (TCD), Dublin, Ireland | [i] PhD Program of Neuroscience, Pontificia Universidad Javeriana, Bogotá, Colombia | [j] Center for Brain and Memory Intellectus, Hospital Universitario San Ignacio, Bogotá, Colombia | [k] Department of Psychology, Washington State University, Pullman, WA, USA | [l] Department of Psychological Sciences and Health, University of Strathclyde, Glasgow, UK

Correspondence: [*] Correspondence to: Andrea Slachevsky, MD, PhD, Gerosciences Center for Brain Health and Metabolism, Facultad de Medicina, Universidad de Chile, Avenida Salvador 486, Providencia, Santiago, Chile. Tel.: +56 2 29770530; E-mail: [email protected]; ORCID: 0000-0001-6285-3189 and Mario A. Parra, MD, PhD, Department of Psychological Sciences & Health, University of Strathclyde, Graham Hills Building, Room GH521, 40 George Street, Glasgow, G1 1QE, UK. Tel.: +44 0 141 548 4362; E-mail: [email protected].

Abstract: Dementia is a syndrome characterized by cognitive and neuropsychiatric symptoms associated with progressive functional decline (FD). FD is a core diagnostic criterion for dementia, setting the threshold between its prodromal stages and the full-blown disease. The operationalization of FD continues to generate a great deal of controversy. For instance, the threshold of FD for the diagnosis of dementia varies across diagnostic criteria, supporting the need for standardization of this construct. Moreover, there is a need to reconsider how we are measuring FD to set boundaries between normal aging, mild cognitive impairment, and dementia. In this paper, we propose a multidimensional framework that addresses outstanding issues in the assessment of FD: i) What activities of daily living (ADLs) are necessary to sustain an independent living in aging? ii) How to assess FD in individuals with suspected neurocognitive disorders? iii) To whom is the assessment directed? and iv) How much does FD differentiate healthy aging from mild and major neurocognitive disorders? Importantly, the To Whom Question introduces a person-centered approach that regards patients and caregivers as active agents in the assessment process of FD. Thus, once impaired ADLs have been identified, patients can indicate how significant such impairments are for them in daily life. We envisage that this new framework will guide future strategies to enhance functional assessment and treatment of patients with dementia and their caregivers.

Keywords: Activities of daily living, Alzheimer’s disease, dementia, disability, functional dependence, functional independence, functional status, person-center care, functional ability

DOI: 10.3233/JAD-230376

Journal: Journal of Alzheimer's Disease, vol. 99, no. 4, pp. 1187-1205, 2024