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1.
J Aging Stud ; 67: 101193, 2023 Dec.
Article in English | MEDLINE | ID: mdl-38012950

ABSTRACT

The study aimed to explore the impact of Alzheimer's disease (AD) on spouse-carer's lives and the ways it affects their marital relationship and sexual activity. Data were obtained from qualitative interviews conducted with 11 spouse-carers of people with AD. Using interpretative phenomenological analysis (IPA), three themes emerged: psychological and emotional impact, social impact, and sexual impact. Some spouse-carers reported stress, poor emotional well-being, frustration, doubts about how to deal with the situation, sadness, loneliness, perception of losing connection with the partner, and feelings of companionship disappearing. Meanwhile, other spouse-carers reported closer relations and greater affection for their care-recipients after the diagnosis. Changes in sexual activity were attributed to aging and/or the effects of the illness. Gender influenced the perception of changes in the marital relationship but not in sexual activity. Participants reported conflicting perspectives towards the importance of sexual activity in the marital relationship and the replacement of sexual intercourse with other modes of expressing affection. We believe that understanding the specificities of marital relationships of couples in whom one spouse was diagnosed with AD would be helpful for developing coping strategies for persons living with dementia and their spouses.


Subject(s)
Alzheimer Disease , Caregivers , Humans , Caregivers/psychology , Spouses/psychology , Love , Alzheimer Disease/psychology , Sexual Behavior
2.
J Geriatr Psychiatry Neurol ; 34(2): 119-127, 2021 03.
Article in English | MEDLINE | ID: mdl-32223501

ABSTRACT

The quality of life (QoL) of people with Alzheimer disease (PwAD) may be influenced by the type of relationship between carer and the PwAD. Dyads of 98 PwAD/carers (N = 49 spouse-carers; N = 49 nonspouses carers) were measured about QoL, cognition, dementia severity, awareness of disease, functionality, depression, anxiety, and burden of care. Univariate and multivariate regression analyses were conducted to identify the factors that influenced the spouse and nonspouse self-report PwAD QoL (PQOL) and to compare carers' ratings of PwAD QoL (C-PQOL). The total score of QoL for spouse and nonspouse PwAD showed no significant difference (P = .29). The linear regression demonstrated that higher awareness of disease was significantly related to spouse PQOL (P = .001). Nonspouse PQOL was negatively related to lower depression (P = .007). The total score of QoL for spouse and nonspouse C-PQOL showed no significant difference (P = .14). The linear regression demonstrated that depression of spouse-PwAD (P < .001) and burden of care (P = .001) were negatively related to spouse-dyads' C-PQOL. The nonspouse-dyads C-PQOL was negatively related to depression of nonspouse-PwAD (P < .001), awareness of disease (P = .001), and the mood of the carer (P = .01). Spouse and nonspouse PwAD evaluate PQOL better than carers (C-PQOL). No significant difference was found in the total PQOL and C-PQOL of spouse and nonspouse, but dyads evaluated differently about what is important to assess QoL.


Subject(s)
Alzheimer Disease , Quality of Life , Caregivers , Humans , Self Report , Spouses
3.
J Alzheimers Dis Rep ; 4(1): 405-415, 2020 Oct 08.
Article in English | MEDLINE | ID: mdl-33283162

ABSTRACT

BACKGROUND: Awareness of functional status may underlie specific profiles and differences related to stage severity in individuals with Alzheimer's disease (AD). OBJECTIVE: This study aimed to assess self-reported experiences of awareness of functional activity in people with mild and moderate AD. METHODS: This is a mixed methods approach. The qualitative part was conducted through semi-structured interviews concerning the experiences and awareness of deficits in 38 older adults with mild or moderate AD. The quantitative approach included a comparison between groups with regard to concerns of awareness and clinic and demographic data. RESULTS: Impairment on awareness of disease and awareness of functional deficits was observed even in the mild stages of AD. There was also a noticeable progression of impairments of both kinds of awareness from mild to moderate stage of disease. The majority of participants with mild and moderate AD were partially aware of their functional deficits. Both groups of participants reported some negative impact; however, they were not able to entirely describe their functional status. Also, deficits to recognize the need for help with hygiene and general tasks were observed. Significant differences were found in awareness of need for help with general tasks and awareness of need for help with hygiene tasks. CONCLUSION: People with mild and moderate AD may describe their aware of the disease better than specific functional deficits, and most of them can provide some reports concerning to the impact of the disease.

4.
J Geriatr Psychiatry Neurol ; 32(2): 59-67, 2019 03.
Article in English | MEDLINE | ID: mdl-30651027

ABSTRACT

Young-onset Alzheimer disease (YOAD) causes psychological and emotional difficulties for carers. However, even in the face of considerable caregiving demands and burden, some carers are resistant to stress, which may be a sign of resilience. This study investigated whether the clinical symptoms of the person with YOAD might be associated with resilience in their carers. A consecutive series of 43 persons with YOAD and their 43 family caregivers were assessed. The carers showed moderate to high level of resilience, low level of anxiety and depressive symptoms, and moderate level of burden. No relationship was found between resilience and sociodemographic characteristics of both carers and care recipient and with clinical characteristics of persons with YOAD. A linear regression analysis showed that resilience was inversely associated with carers' depressive symptoms. The findings suggest that resilience may mainly be related to carers' mental health.


Subject(s)
Alzheimer Disease , Anxiety/psychology , Caregivers/psychology , Resilience, Psychological , Aged , Anxiety/etiology , Emotions , Female , Humans , Male , Middle Aged
5.
Alzheimer Dis Assoc Disord ; 31(4): 335-342, 2017.
Article in English | MEDLINE | ID: mdl-29166356

ABSTRACT

Awareness of deficits is a multidimensional phenomenon described as the ability to acknowledge difficulties and impairments. We investigated whether unawareness affects distinct domains to different degrees and identified the factors related to the awareness impairment in Alzheimer Disease (AD). Using a cross-sectional design, we assessed 89 people with AD (PwAD) and their caregivers. Awareness was evaluated by scoring discrepant responses between PwAD and their caregivers across domains including cognitive functioning and health condition, functional activity impairments, emotional state, social functioning, and interpersonal relationships. The awareness of functional activity impairments domain showed a greater discrepancy compared with the other domains. Multiple regression analysis revealed that lack of awareness of cognitive functioning and health condition was related to PwAD unawareness of functional activity impairments, age, and caregiver burden. The emotional state domain was related to PwAD unawareness of functional activity impairments and depressive symptoms. There was also a relationship between the social functioning and relationships domain and caregiver burden. The functional activity impairments domain was related to deficits in the following domains: cognitive functioning and health condition, emotional state, social and emotional functioning, and PwAD self-reported quality of life. Although we observed that 1 domain can influence another, our results suggest that the factors related to each of the different objects of awareness are varied.


Subject(s)
Alzheimer Disease/psychology , Awareness , Caregivers/psychology , Aged , Aged, 80 and over , Cross-Sectional Studies , Female , Humans , Male , Middle Aged , Quality of Life/psychology
6.
Int Psychogeriatr ; 29(2): 185-193, 2017 02.
Article in English | MEDLINE | ID: mdl-27719688

ABSTRACT

INTRODUCTION: The onset of Alzheimer's disease (AD) affects couples' relationship. We investigated the perception of change and sexual satisfaction in spouse-caregivers and their partners diagnosed with AD. METHODS: We compared 74 dyads of people with Alzheimer's disease (PwAD)/spouse-caregivers and 21 elderly dyads control. We assessed sexual satisfaction with Questionnaire on Sexual Experience and Satisfaction (QSES), cognition using a Mini-Mental State Examination (MMSE), disease severity using a Clinical Dementia Rating scale (CDR), awareness of disease with Assessment Scale of Psychosocial Impact of the Diagnosis of Dementia (ASPIDD), functionality with Pfeffer Functional Activities Questionnaire (FAQ), depressive symptoms with Cornell Scale for Depression in Dementia (CSDD), quality of life using a Quality of Life in Alzheimer's Disease Scale (QoL-AD), and burden using a Zarit Burden Interview (ZBI). RESULTS: We found differences between the perception and no perception of change in sexual activity of PwAD (p < 0.001), spouse-caregivers (p < 0.01), and controls (p < 0.05). Moderate to severe sexual dissatisfaction was observed in 36.5% of PwAD, 65% of spouse-caregivers, and 31% of controls. PwAD sexual satisfaction was related to cognitive impairment (p < 0.05). Spouse-caregivers sexual satisfaction was related to gender (p < 0.05) and the presence of sexual activity (p < 0.001). CONCLUSIONS: The perception of change with higher sexual dissatisfaction, were significant in PwAD and their spouse-caregivers, in comparison with couples of elderly without dementia.


Subject(s)
Alzheimer Disease/psychology , Caregivers/psychology , Orgasm , Sexual Behavior/statistics & numerical data , Spouses/psychology , Aged , Aged, 80 and over , Awareness , Brazil , Emotions , Female , Humans , Logistic Models , Male , Middle Aged , Multivariate Analysis , Psychiatric Status Rating Scales , Quality of Life/psychology , Severity of Illness Index
7.
Int Psychogeriatr ; 27(5): 837-45, 2015 May.
Article in English | MEDLINE | ID: mdl-25498134

ABSTRACT

BACKGROUND: The relationship between sexuality and quality of life (QoL) of spouse-caregivers remains unclear. We designed this study to evaluate the relationship between sexual satisfaction and spouse-caregivers' QoL, and to determine the influence of the clinical characteristics of people with dementia (PWD) on spouse-caregivers' self-reported QoL. METHODS: Using a cross-sectional design, 54 PWD and their spouse-caregivers completed the QoL in Alzheimer's Disease scale (QoL-AD), questionnaire on sexual experience and satisfaction (QSES), Mini-Mental State Examination (MMSE), Clinical Dementia Rating scale (CDR), Assessment Scale of Psychosocial Impact of the Diagnosis of Dementia (ASPIDD), Pfeffer functional activities questionnaire (FAQ), the Cornell scale for depression in dementia (CSDD) and Zarit burden interview (ZBI). Univariate and multivariate regression analyses were conducted to identify the factors that influenced the spouse-caregivers' QoL ratings. RESULTS: We did not find a significant difference in QoL between male and female spouse-caregivers (p = 0.71). We also found that 13% of males and 48.1% of females demonstrated moderate to severe sexual dissatisfaction. However, we did not find a significant correlation between spouse-caregivers' QoL and sexual satisfaction (p = 0.41). The linear regression indicated that impaired awareness and lower QoL of PWD were significantly related to spouse-caregivers' QoL (p = 0.000). CONCLUSIONS: The spouse-caregivers' QoL is influenced by awareness of disease and PWD QoL. Our study would be helpful for the development of adequate psycho-educational approaches to increase spouse-caregivers' QoL, considering the specificities of the couples' relationship.


Subject(s)
Alzheimer Disease/therapy , Caregivers/psychology , Quality of Life , Spouses/psychology , Activities of Daily Living/psychology , Aged , Alzheimer Disease/psychology , Female , Humans , Male , Neuropsychological Tests , Psychological Tests , Quality of Life/psychology , Severity of Illness Index , Surveys and Questionnaires
8.
J Ren Care ; 38(3): 131-7, 2012 Sep.
Article in English | MEDLINE | ID: mdl-22429289

ABSTRACT

Psychiatric disorders in patients with end-stage renal disease are associated with poor prognosis and quality of life. The goal of this study is to investigate the association between psychiatric disorders and renal disease in patients undergoing dialysis treatment, compared with other chronic diseases, appreciating the demographic status of these patients. Sixty-nine patients participated in a diagnostic interview and gave socio-demographic data. The population was composed of 55% men aged 19-77 years with an average age of 50 years (95% CI = 47-54 years). The prevalence of psychiatric disorders found in this study (46.6%) was compared with that found in patients with asthma, polycystic ovary syndrome and HIV-positive. Moreover, the prevalence of the four most common psychiatric disorders which were identified among patients on dialysis were also the subject of comparison between them and others. These results demonstrate the relationship between the various psychiatric disorders and are compatible with other research studies.


Subject(s)
Kidney Failure, Chronic/psychology , Mental Disorders/complications , Adult , Aged , Comorbidity , Cross-Sectional Studies , Female , Humans , Kidney Failure, Chronic/therapy , Male , Mental Disorders/epidemiology , Middle Aged , Prevalence , Renal Dialysis , Socioeconomic Factors , Young Adult
9.
Compr Psychiatry ; 52(5): 465-8, 2011.
Article in English | MEDLINE | ID: mdl-21193182

ABSTRACT

Suicide risk (SR) has been associated to several factors; one of them is the presence of psychiatric disorders. This study has the objective of investigating the relationship between the risk factors for suicidal behavior in patient bearers of chronic renal illness who are undertaking hemodialysis treatment. Sixty-nine undertook a short, structured diagnostic interview. The prevalence of some psychiatric disorders showed itself greater in the sample than that in the population in general. A significant positive correlation was found between SR, major depressive episode, and agoraphobia without panic disorder. The religiosity of the patient was also evaluated as an influencing factor of SR. Nonreligious patients had 8 times more chance to have SR compared to religious patients. However, the referred effect only occurred in nondepressed religious patients. The latter indicated that religiosity had its effect annulled in depressed patients. This study shows the importance of measures of intervention in mental health, mainly in relation to prevention and treatment of major depressive episode with a view to reducing SR.


Subject(s)
Renal Dialysis/psychology , Renal Insufficiency, Chronic/complications , Renal Insufficiency, Chronic/psychology , Suicide/psychology , Comorbidity , Female , Humans , Interview, Psychological , Male , Mental Disorders/etiology , Middle Aged , Prevalence , Religion , Renal Insufficiency, Chronic/economics , Risk Factors , Suicidal Ideation
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