Life Situation, Coping and Quality of Life in People with High and Low Risk of Developing Alzheimer’s Disease

Abstract

The psychosocial consequences of being at different risk for inheriting Alzheimer’s disease (AD) were investigated in a high-risk group (n = 106) and a low-risk group (n = 37). Non-affected individuals from families with AD in two or more generations answered questions about their life situation, quality of life and coping. Their answers were compared with a population sample (n = 408). The high-risk group assessed the quality of their personal relationships and everyday life higher than did the population sample. They also used less emotive and supportive coping strategies compared with the population sample. Nearly 90% in the high-risk group felt anxiety concerning their own risk or the risk of their children and grandchildren of developing AD. About 50% of the respondents complained about a lack of information. The pieces of information they asked for were early signs of the disease, treatment, and practical information on how to handle everyday life with an affected relative.

Relationships between coping, coping resources and quality of life in patients with chronic illness: a pilot study

“…The scores for each scale are coded, summed and transformed into a scale ranging from 0 (worst possible QoL) to 100 (best possible QoL). Cronbach’s alpha values have ranged from 0.81 to 0.86 (34). In the present study, the alpha values for the subscales ranged from 0.80 to 0.90 and 0.88 for the total scale.…”

“…The LSQ-SF consists of 18 items grouped into three scales called health, personal relationships and everyday life (34). The answers are expressed on a 7-point Likert scale from 1 (very much) to 7 (not at all).…”

Dementia worry: a psychological examination of an unexplored phenomenon

“…Adult children with a parent who has been diagnosed with dementia are more likely to be concerned about developing dementia themselves than are adults with no parental history of dementia (e.g., Axelman et al 2003;Hodgson et al 1999;Roberts and Connell 2000;Yeo et al 2007). For example, in the Cutler and Hodgson study (2001), 92 % of the adult children with parental history of dementia were either 'very' or 'somewhat' concerned about developing AD, as compared with 47 % of the comparison group.…”

Overall and domain‐specific life satisfaction when living with familial Alzheimer's disease risk: A quantitative approach

“…The study participants were recruited from an ongoing longitudinal clinical research project at the Karolinska Institute in Stockholm, Sweden, in which asymptomatic family members with a 50% risk of inheriting a causal AD mutation in the amyloid precursor gene ( APP ) or PSEN1 are clinically examined in a prospective manner with the aim of identifying biomarkers for an early diagnosis of AD (Thordardottir et al, ). Three families with members from two or more generations have been a part of this FAD biomarker study since the 1990s (Axelman et al, ), and a fourth family was included in 2010 (Keller et al, ) for a total of 51 individuals. In addition to participation in the FAD biomarker study, the inclusion criteria for the present investigation were no diagnosis of mild cognitive impairment and a diagnosis of AD.…”

“…Only a few studies have focused on the emotional impact and perceived life satisfaction in high‐risk individuals. In a study of the psychosocial consequences of an increased risk of AD, Axelman, Lannfelt, Almkvist, and Carlsson () observed that nearly 90% of individuals in the high‐risk group felt anxiety about their own risk, as well as their children's and grandchildren's risk, of developing AD. An overview of efficacy studies has demonstrated that there is no empirical scientific support for the methods, procedures, and organizational forms used to manage and care for persons and who are at risk for FAD and their families (Swedish Council on Health Technology Assessment, ).…”