The use of legal guardians and financial powers of attorney among home-dwellers with Alzheimer’s disease living with their spousal caregivers

Abstract

We conducted a cross-sectional survey of a random sample of 1943 spouses of home-dwellers with Alzheimer's disease (AD) to examine the prevalence of court-appointed guardians or financial powers of attorney for persons with AD, related factors and the need for information about these issues among caregiving families. The questionnaire consisted questions on variables of demographic characteristics, disability, symptoms and care needs of the person with dementia, the strain of caregiving, the use of court-appointed legal guardians or powers of attorney, as well as discussions about these issues -- and the need for them -- with a doctor. The response rate was 77% and the mean ages of those with AD and caregivers were 80.2 and 78.2 years, respectively. The use of legal guardians was rare (4.3%), while the use of financial powers of attorney was more common (37.8%). Only 9.9% of the couples had discussed these issues with their doctor, whereas 47.9% expressed a need for it. The factors associated with the use of these legal arrangements were related to the severity of dementia, including experiencing dementia symptoms for more than 3 years, poor functioning, incontinence and behavioural symptoms. There is a clear need for information on medico-legal issues related to dementia among caregivers of AD patients. If held soon after the diagnosis, such discussions could support the autonomy of these persons in spite of AD and enable them to plan for the future as they wish.

Counselling of people with dementia in legal matters – social and health care professionals’ role

“…Although the law makes it clear that social and health care professionals have a responsibility to inform their clients also of the basic legal and social security options, our studies indicate that most professionals do not regard the provision of such counselling to be part of their duties. Furthermore, according to a study carried out in 2008, only some 10% of families involved in informal care had discussed with their doctor the legal measures involved in planning for the future, although almost 50% expressed a wish to do so (Raivio et al, 2008). Another study revealed that 59% of caregivers felt that there was a need to discuss advanced care planning with their doctor but only 6% reported having had a discussion of this kind (Laakkonen, Raivio, Eloniemi-Sulkava, Tilvis, et al, 2008).…”

“…Furthermore, giving information and advice about legal issues of clear relevance to people with dementia is an important part of counselling (Wackerbarth & Johnson, 2002). Such advice may focus on legal matters involving social security and patients' rights (Herring, 2009b;Raivio et al, 2007) as well as guardianship services or later life legal planning (Raivio, Mäki-Petäjä-Leinonen, Laakkonen, Tilvis, & Pitkälä, 2008). Indeed, planning for the future is an essential part of anticipating the progression of dementia.…”

Monetary value of informal caregiving in dementia from a societal perspective

“…Our participants were older with more comorbidities than participants in earlier studies [1,5,7,8,[21][22][23][24][25], which also included a wide range of people having very mild to very severe dementia. However, people participating in our trials have less severe dementia and use more often antidementia medications than those in large epidemiological studies [1,[25][26][27]. Furthermore, the caregivers in our study are younger and better educated than those in Finnish epidemiological study [26].…”

Attitudes About the Competence of Charitable Gift Givers

“…Court decisions about a person's competence have far-reaching consequences which include restrictions on that individual's liberty and civil rights. This is especially true for older adults (Kane, 2002;Kapp, 1999;Moye et al, 2013;Raivio, Maki-Petaja-Leinonen, Tilvis, & Pitkala, 2008).…”