Disclosing a diagnosis of dementia: Is age a factor?

Disclosing a diagnosis of dementia: a systematic review

“…Evidence regarding the relationship between disclosure and severity of dementia was inconsistent with disclosure being more likely to people with mild dementia in two studies (Rice and Warner, 1994;Rice et al, 1997), but more likely to those with moderate symptoms in another (Fortinsky et al, 1995). Younger people with dementia and those with younger carers were more likely to be told the diagnosis by a health care professional (Heal and Husband, 1998). Younger clinicians, those with fewer years in practice and those with positive attitudes to early diagnosis were more likely to disclose (Fortinsky et al, 1995;Downs et al, 2002).…”

“…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).…”

“…Older people with dementia and those with concurrent depression had less favourable attitudes to disclosure (Jha et al, 2001). Carers' attitudes were related to whether the diagnosis had been disclosed to the person they supported (Heal and Husband, 1998;Holroyd et al, 2002), but were not consistently associated with severity or type of dementia (Bachman et al, 2000;Holroyd et al, 2002; would want to be told if they developed Alzheimer's disease. The most common reason against disclosure was that it would be too upsetting for the patient; the most common reasons for disclosure were the right to know and opportunity to plan for the future Continues disclosing a diagnosis of dementia Continues disclosing a diagnosis of dementia Fahy et al, 2003;Pucci et al, 2003).…”

“…However, it is difficult to distinguish the consequences of diagnostic disclosure from the problems that arise from living with dementia independent of whether the diagnosis was disclosed. Following disclosure, studies have reported feelings of shock, anger and fear (Pearce et al, 2002;Young, 2002;Pratt and (Heal and Husband 1998*;Johnson et al, 2000) Patient's desire to be told 2 (Vassilas and Donaldson, 1998;Johnson et al, 2000) Age of carer 1 (Heal and Husband, 1998*) Clinician attitude to early diagnosis 1 (Downs et al, 2002*) Carer's desire for patient to be told 1 (Johnson et al, 2000) Comorbidity of patient 1 (Johnson et al, 2000) Emotional stability of patient 1 (Vassilas and Donaldson, 1998) Insight of patient 1 (Johnson et al, 2000) Personality of patient 1 (Johnson et al, 2000) *p < 0.05; **p < 0.01; ***p < 0.001. with negative effects on selfesteem, personhood and self-confidence, in some cases leading to hypervigilance about further cognitive failure, and/or restriction of activities (Husband, 1999;Husband, 2000;Pratt and Wilkinson, 2003). While not specific about the impacts of disclosure, one study reported that 51% of people with dementia reacted poorly to the diagnosis, while 46% took the information well (Holroyd et al, 2002).…”

“…The wide range of respondents citing each reason probably reflects the different approaches to data collection. The awareness of people with dementia and their desire to know the diagnosis were cited almost exclusively by carers (Husband, 1996;Maguire et al, 1996;Barnes, 1997;Heal and Husband, 1998;Sullivan and O'Conor, 2001). In contrast, obtaining a second opinion and traveling were most commonly cited by 'other' respondents (Holroyd et al, 1996;Erde et al, 1 10 15 1 27 26 Self completion questionnaire 1 2 5 2 10 9 Telephone survey -2 --2 2 Structured interview 3 8 2 1 14 12 Qualitative interview 6 5 1 -12 7 Focus or nominal group 1 1 3 -5 4 Other 2 1 1 -4 3 Unclear or not specified 1 2 --3 2 Total 15 31 27 4 77* 65* Number of studies 13 29 24 4 70* *Six studies used two methods, seven studies involved two groups of participants; and two studies involved three groups of participants.…”