Perceived Unmet Need and Need-Related Distress of People Living With Dementia

Abstract

The unmet needs of people living with dementia have been shown to be multidimensional and impact well-being. However, there are a lack of studies examining variability of unmet needs and need-related distress from the person living with dementia’s perspective. The current study ( n = 12) examined the self-reported unmet needs and need-related distress of people with mild to moderate dementia. Seventy-five percent of participants ( n = 9) identified at least one unmet need and 50% ( n = 6) reported 10 or more unmet needs. “Finding and Arranging Services” and “Health Information” subscales had the highest reported average unmet needs. The most frequently reported unmet need-item was “ getting information about your memory problems?” Participants reported variability in distress for both unmet and met needs. Continued research can provide beneficial information on the relationship between unmet needs, need-related distress, and outcomes of well-being for future interventions.

Identifying longitudinal healthcare pathways and subsequent mortality for people living with dementia in England: an observational group-based trajectory analysis

“…Therefore, clinicians need to discuss with PLWD and carers the intended purpose and potential impacts of medications to make informed decisions on their use [ 60 ]. While no two PLWD are the same and their experiences will depend on their specific needs [ 61 ], there are collective similarities in experiences of healthcare [ 62 , 63 ].…”

Dalzanemdor (SAGE‐718), a novel, investigational N‐methyl‐D‐aspartate receptor positive allosteric modulator: Safety, tolerability, and clinical pharmacology in randomized dose‐finding studies in healthy participants and an open‐label study in participants with Huntington's disease

“… 31 , 32 , 33 , 34 , 35 Effective and well–tolerated therapies to treat cognitive impairment in neurodegenerative disorders remain an area of significant unmet need. 35 , 36 , 37 …”

“…[31][32][33][34][35] Effective and well-tolerated therapies to treat cognitive impairment in neurodegenerative disorders remain an area of significant unmet need. [35][36][37] NMDAR function plays a critical role in cognitive processes. Multiple lines of evidence suggest that NMDAR hypofunction (i.e., decreased expression and/or function) may contribute to cognitive impairment in HD and AD.…”

“…Cognitive impairment is a common, early manifestation of neurodegenerative disorders, including HD and AD, and is associated with difficulties in performing everyday activities, loss of independence, and decreased quality of life for affected individuals and their families 31–35 . Effective and well–tolerated therapies to treat cognitive impairment in neurodegenerative disorders remain an area of significant unmet need 35–37 …”

Factors influencing the psychosocial well‐being of people with dementia and their informal caregivers: A systematic review of dyadic studies

“…The construct of psychosocial well‐being encompasses emotional, psychological, social and collective well‐being (Larson, 1996), thereby sharing similarities with the concept of ‘quality of life’ (Eiroa‐Orosa, 2020). The progressive and incurable nature of dementia is a simultaneous stressor for individuals with dementia and their caregivers (Minyo & Judge, 2022; Wawrziczny et al., 2017). Almost all older adults living in communities with dementia will experience symptoms such as depression, anxiety or a combination within 5 years (Onyike, 2016).…”