Information and advice received by carers of younger people with dementia

Abstract

Aims and methodRetrospective information on advice and information received post-diagnosis was obtained from 40 carers of younger people with dementia, using a semi-structured interview.ResultsTwelve carers received services from old age psychiatry, the remaining 28 from predominantly adult psychiatry or neurology. Those in receipt of old age services reported greater adequacy of diagnostic information, higher levels of advice giving and more frequent referral to social services.Clinical implicationsWhile old age services were more successful on the parameters examined, the gradually emergent nature of the diagnosis may be a crucial factor in the lack of information and advice received by the comparison group.

The impact of young onset dementia on the family: a literature review

“…Seven of the studies (Sperlinger and Furst, 1994; Luscombe et al ., 1998; Husband and Shah, 1999; Williams et al ., 2001; Liebson et al ., 2005; Alzheimer's Australia, 2007; Dartington, 2007) broached the difficulties in gaining a diagnosis, including long delays to receive a diagnosis, misdiagnoses, being turned away from professionals and lack of communication. Diagnostic problems seem to be exacerbated by diverse initial signs of dementia (Sperlinger and Furst, 1994) and the gradual nature of changes (Liebson et al ., 2005).…”

“…A number of studies included adult children of younger people with dementia as carers, with the youngest age reported as 21 years. Six studies (Delaney and Rosenvinge, 1995; Newens, 1995; Husband and Shah, 1999; Keady and Nolan, 1999; Mackay and Marriott, 2000; Mourik et al ., 2004) included adult children as carers, but unfortunately did not compare them with spouse carers. In contrast, Riedijk et al .…”

“…A number of studies included adult children of younger people with dementia as carers, with the youngest age reported as 21 years. Six studies (Delaney and Rosenvinge, 1995;Newens, 1995;Husband and Shah, 1999;Keady and Nolan, 1999;Mackay and Marriott, 2000;Mourik et al, 2004) included adult children as carers, but unfortunately did not compare them with spouse carers. In contrast, Riedijk et al (2006) compared level of burden with relationship to patient and found no difference between spouses and adult children, and Mackay and Marriott (2000) noted that, while eight of the ten carers they studied scored above the cut-off for psychiatric "caseness" on the GHQ, higher levels of distress were reported by spouse carers than by others.…”

Younger Onset Dementia

“…Studies focused on service experience issues 21,33,36,88,[98][99][100][101][102][103] noted the lack of a clear diagnostic pathway, poor provision of information, the lack of appropriate referrals to support services, and the high volume of informal care provided. High levels of unmet needs for people with YOD in such areas as daytime activities, communication, social companionship, intimate relations, and information were reported, 104 and these were significantly associated with the level and presence of neuropsychiatric symptoms.…”

Time to diagnosis in young-onset dementia and its determinants: the INSPIRED study

“…Factors perceived to contribute to these delays include misdiagnosis, clinician's lack of knowledge, poor clinician attitudes and communication skills and difficulties in accessing specialist services (Luscombe et al, 1998;Husband and Shah, 1999;Svanberg et al;2011). The diversity of early dementia symptoms means that there are multiple clinical pathways to obtain a diagnosis (Sperlinger and Furst, 1994;Williams et al, 2001).…”