Out of sight out of mind? Support and information given to distant and near relatives of those with dementia

Abstract

The impact of having a relative with dementia does not lessen with distance. The wider family need support and information as well as 'primary carers'. If the whole family is to be supported in their caring role, then clinicians and the lay societies need to widen their supportive net.

Understanding the information behaviours of carers of people with dementia: A critical review of models from information science

“…A number of empirical studies have attempted to quantify the level and types of information needed by carers of people with dementia (e.g., Thompsell & Lovestone, 2002, Wackerbarth & Johnson, 2002, Wald, et al 2003. These studies, although not from information science, implicitly adopt the system-centred paradigm.…”

“…It also assumes that carers are a homogenous group, caring for a homogenous group of people with dementia, not taking into account how the information is used nor how needs may change over time. Thompsell and Lovestone (2002) recognised that carers are heterogeneous, hypothesising that family members would have different needs and information behaviours, depending on whether they lived nearby (within one hour) or further away from the person with dementia. They found that 31% of all participants were dissatisfied with the information given to them, but only 17% of the relatives who lived nearby reported this, compared with 48% of those that lived further away.…”

“…Those who used the Alzheimer's Society were found to be better educated than those who did not. Thompsell and Lovestone (2002) concluded that the link between caregiver burden and information need was not obvious, as relatives living further away were unlikely to shoulder as much responsibility for care, but reported more unmet information needs. Respondents rated each information item on a scale of 0 (not at all important) to 3 (essential).…”

“…First, although quantitative research aims to be objective, the measures used in the studies by Wald et al (2003), and Thompsell and Lovestone (2002) to ascertain information needs, employed a pre-defined list of information categories. Only Wackerbarth and Johnson (2002) used a mixed-methods approach , in which categories of information need originated from in depth interviews with carers about their general needs .…”

Tailor Made Care-mix in Dementia

“…This growing group which faces specific challenges and has particular needs is another "blind spot" in the body of caregiving-literature, -there is only sparse research and hardly any interventions have been developed [43,44]. In a study about family members caring for pwd Thompsell and Lovestone [45] showed that the "impact of having a relative with dementia does not lessen with distance. The wider family needs support and information as well as the 'primary caregiver'."…”