The Carrot and the Stick: Benefits and Barriers in Getting a Diagnosis

Abstract

The goals of this study were to identify the benefits and barriers perceived by family caregivers of persons who have been through a diagnostic assessment for dementia symptoms and to determine which caregivers experience more benefits and barriers associated with assessments. A survey was mailed to caregivers involved in the decision to seek a diagnostic assessment for a family member at a University of Kentucky memory disorders clinic. A total of 528 family caregivers (response rate 71.7%) returned a 4-page survey designed to elicit benefits, barriers, and demographic information. Respondents delayed the diagnostic assessment for an average of 22.4 months after noticing symptoms. Perceived benefits involved confirmation of a medical condition, access to treatment, and help preparing for the caregiving role. Barriers were both emotional and pragmatic in nature. Respondents who were younger, visited the rural assessment clinic, and had less education experienced more barriers. All groups reported receiving the same number of benefits from the assessment. By incorporating these benefits and barriers, interventions can be designed to increase the likelihood of early diagnostic assessments.

Using the life course perspective to study the entry into the illness trajectory: The perspective of caregivers of people with Alzheimer's disease

“…Basing our analysis on the LCP has resulted in the generation of new knowledge that complements the findings of other studies. For example, like Wackerbarth and Johnson (2002), we found that an average of 2 years passes before families obtain a diagnosis of dementia. Our approach went further, however, in that it distinguishes types of entry in which a diagnosis is made within the first year (Types 1, 2 and 3) from types in which the diagnosis takes longer (Types 4 and 5).…”

Diagnosis‐seeking at subspecialty memory clinics: trigger events

“…Van Hout et al (2001) found that families, patients and their general practitioners viewed the assessment process at a memory clinic as useful and were satisfied with the communication of assessment results. Based on other portions of the survey used in this study, Wackerbarth and Johnson (2002) also found that caregivers believed they had gained a number of benefits from the assessment, including recognition of 'the need to make the most out of the present', access to treatment, and confirmation that a medical problem exists. The events and recommendations that bring families to memory clinics for assessment are therefore a worthy subject of investigation.…”

Disclosing a diagnosis of dementia: a systematic review

“…Low response rates were evident in several studies, with less than half of the sample participating (Glosser et al, 1985;Fortinsky et al, 1995;Rice et al, 1997;Glasser and Miller, 1998;Heal and Husband, 1998;Bruce and Paterson, 2000;Knopman et al, 2000;Cody et al, 2002;Margiotta et al, 2002). Only three studies systematically analysed non-response (Bruce and Paterson, 2000;Van Hout et al, 2001;Wackerbarth and Johnson, 2002), and detailed information on response rates was not always provided (Newens et al, 1994;Alzheimer's Disease Society, 1995). Only one third of the studies using standardized questionnaires or interviews described pilot work (Chenoweth and Spencer, 1986;Brodaty et al, 1990;Brodaty et al, 1994;Wolff et al, 1995;Vassilas and Donaldson, 1998;Johnson et al, 2000;Sullivan and O'Conor, 2001;Van Hout et al, 2001;Wackerbarth and Johnson, 2002;Cody et al, 2002;Lindesay et al, 2002;VernooijDassen et al, 2003).…”

“…Only three studies systematically analysed non-response (Bruce and Paterson, 2000;Van Hout et al, 2001;Wackerbarth and Johnson, 2002), and detailed information on response rates was not always provided (Newens et al, 1994;Alzheimer's Disease Society, 1995). Only one third of the studies using standardized questionnaires or interviews described pilot work (Chenoweth and Spencer, 1986;Brodaty et al, 1990;Brodaty et al, 1994;Wolff et al, 1995;Vassilas and Donaldson, 1998;Johnson et al, 2000;Sullivan and O'Conor, 2001;Van Hout et al, 2001;Wackerbarth and Johnson, 2002;Cody et al, 2002;Lindesay et al, 2002;VernooijDassen et al, 2003). In several studies, interviews with people with dementia or their carers were conducted by a practitioner involved in care provision, potentially biasing their responses (Maguire et al, 1996;Husband, 1999;Husband, 2000;Marzanski, 2000).…”