Psychological Correlates of (Non)Use of Formal Resources by Family Caregivers of People With Dementia

Abstract Caring for a relative with dementia is a stressful task characterized by a high number of demands extended in time. Therefore, caregivers frequently report the need for assistance to cope with the situation. However, formal resources use is low among that population. The objective of this study was to explore the correlates of (non)use of formal resources (day care center and home care) by family caregivers of people with dementia. Participants were 225 dementia family caregivers that were individually assessed in a) use of formal resources, b) sociodemographic variables, c) stressors (frequency and reaction to behavioral problems), and d) psychological variables (depression, anxiety, and dysfunctional thoughts about caregiving). A logistic regression was done comparing those who used formal resources with those who did not use them. Caregivers who did not use formal resources were younger (OR = .95; 95% CI [.92 - .98]), devoted more daily hours to caring (OR = 1.07; 95% CI [1.02 - 1.11]), reported higher levels of dysfunctional thoughts about caregiving (OR = 1.07; 95% CI [1.04 – 1.10]) and higher anxiety levels (OR = 1.07; 95% CI [1.00- 1.13]), and their care-recipient had a higher functional autonomy (OR = 1.04; 95% CI [1.02 – 1.05]). Higher levels of anxiety and dysfunctional thoughts in caregivers may be act as barriers to seek for formal support. Targeting these variables may help to increase the use of formal resources by family caregivers of people with dementia.

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Potentially preventable hospitalizations in dementia: family caregiver experiences

International Psychogeriatrics ◽

10.1017/s1041610217000217 ◽

2017 ◽

Vol 29 (7) ◽

pp. 1201-1211 ◽

Cited By ~ 16

Author(s):

Tatiana Sadak ◽

Susan Foster Zdon ◽

Emily Ishado ◽

Oleg Zaslavsky ◽

Soo Borson

Keyword(s):

Lived Experience ◽

Family Caregivers ◽

Care Recipient ◽

Preventable Hospitalizations ◽

Health Crisis ◽

Care Recipients ◽

People With Dementia ◽

Mitigating Factors ◽

Health Event ◽

Caregiver Experiences

ABSTRACTBackground:Health crises in persons living with dementia challenge their caregivers to make pivotal decisions, often under pressure, and to act in new ways on behalf of their care recipient. Disruption of everyday routines and heightened stress are familiar consequences of these events. Hospitalization for acute illness or injury is a familiar health crisis in dementia. The focus of this study is to describe the lived experience of dementia family caregivers whose care recipients had a recent unplanned admission, and to identify potential opportunities for developing preventive interventions.Methods:Family caregivers (n = 20) of people with dementia who experienced a recent hospitalization due to an ambulatory care sensitive condition or fall-related injury completed phone interviews. Interviews used semi-structured protocols to elicit caregivers’ reactions to the hospitalization and recollections of the events leading up to it.Results:Analysis of interview data identified four major themes: (1) caregiver is uncertain how to interpret and act on the change; (2) caregiver is unable to provide necessary care; (3) caregiver experiences a personal crisis in response to the patient's health event; (4) mitigating factors may prevent caregiver crises.Conclusions:This study identifies a need for clinicians and family caregivers to work together to avoid health crises of both caregivers and people with dementia and to enable caregivers to manage the health of their care recipients without sacrificing their own health and wellness.

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Life after care: psychological adjustment to bereavement in family carers of people with dementia

International Psychogeriatrics ◽

10.1017/s104161021500201x ◽

2015 ◽

Vol 28 (5) ◽

pp. 815-823 ◽

Cited By ~ 1

Author(s):

Aggeliki Vlachogianni ◽

Areti Efthymiou ◽

Dimitra Potamianou ◽

Paraskevi Sakka ◽

Vasiliki Orgeta

Keyword(s):

Psychological Adjustment ◽

Care Center ◽

Emotional Reactions ◽

Family Carers ◽

Loved One ◽

Day Care Center ◽

People With Dementia ◽

After Care ◽

Specialist Services ◽

Number Of Individuals

ABSTRACTBackground:Despite well-documented evidence of the psychological effects of caring for a relative with dementia, little is known about the bereavement experiences of family carers. The aim of this study was to explore the key psychological changes associated with carers’ adjustment to bereavement and “life after care.”Methods:All carers taking part were recruited from a day care center, providing specialist services to people with dementia. We asked carers to describe the key changes associated with psychological adjustment to bereavement through semi-structured qualitative in-depth interviews. Strategies carers used to cope with and adapt to their new role were also explored. All data were thematically analysed.Results:Thirty-one carers were interviewed. The most frequent emotional reactions to bereavement were feelings of loneliness, loss, void, sadness, anger, and relief. Most carers were able to adapt to their new role, and engaging in pleasant activities was the most frequent strategy used to cope with loss and “life after care.”Conclusions:Feelings of loneliness and loss are amongst the key emotional reactions shaping carers’ adjustment to bereavement. Most carers are able to adapt to loss; however, a minority experience increased psychological distress after the death of their loved one. A small percentage of carers continues caring for other dependants. Further research is required to identify how carers of people with dementia adapt to bereavement and how this increasing number of individuals can be best supported.

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“There isn't an easy way of finding the help that's available.” Barriers and facilitators of service use among dementia family caregivers: a qualitative study

International Psychogeriatrics ◽

10.1017/s1041610216002532 ◽

2017 ◽

Vol 29 (5) ◽

pp. 765-776 ◽

Cited By ~ 21

Author(s):

Ashley Macleod ◽

Gemma Tatangelo ◽

Marita McCabe ◽

Emily You

Keyword(s):

Family Caregivers ◽

Service Use ◽

Care Service ◽

Aged Care ◽

Community Dwelling ◽

Barriers And Facilitators ◽

Care Recipient ◽

Structured Interviews ◽

Good Communication ◽

People With Dementia

ABSTRACTBackground:Family caregivers of people with dementia have significant unmet needs in regard to their caregiving role. Despite this, they are reluctant to utilize services to reduce their burden. The aim of this study was to examine the barriers and facilitators of service use among family caregivers of people with dementia.Method:Semi-structured interviews were conducted with 24 family caregivers of community-dwelling people with dementia. Of these, 12 were partner caregivers (4 men, 8 women) and 12 were offspring caregivers (2 men, 10 women). The interviews were transcribed and analyzed using thematic analysis.Results:Six main barriers and three facilitators were identified. These barriers and facilitators were relevant across many types of services and supports. The barriers were: the inability to find information about relevant services or support, the poor quality or mistrust of the services, the inflexibility of services, caregivers’ beliefs about their obligations to the caregiving role and resistance by the care recipient. Key facilitators were: having good communication with the care recipient, having an “expert” point of contact, and having beliefs about the caregiving role that enabled the use of services.Conclusion:Given the significant changes in the aged care service-system, it is important to discuss the barriers faced by family caregivers of people with dementia. This will inform the development of targeted strategies to address the lack of service use among these family caregivers.

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Moving from reclusion to partial freedom: the experience of family caregivers for disabled elderly persons assisted in a day care center

Ciência & Saúde Coletiva ◽

10.1590/s1413-81232010000600036 ◽

2010 ◽

Vol 15 (6) ◽

pp. 2973-2981 ◽

Cited By ~ 1

Author(s):

Silvia Cristina Mangini Bocchi ◽

Karen Cristina Urtado Cano ◽

Lilian Baltieri ◽

Daniele Cristina Godoy ◽

Wilza Carla Spiri ◽

...

Keyword(s):

Family Caregivers ◽

Family Caregiver ◽

Day Care ◽

Care Center ◽

Elderly Person ◽

Elderly Persons ◽

Main Category ◽

Day Care Center ◽

The Family ◽

Disabled Elderly

This study aimed at understanding the interactional experience between family caregivers and disabled elderly persons supported in a Day Care Center according to the caregiver's perspective. It also aimed at developing a representative theoretical model for the events experienced by such caregiver. The Grounded Theory was used as methodological framework whereas Interactional Symbolism served as the theoretical framework. Observation and interviews were used for data collection. The following phenomenon arose from the results: feeling of support by the Day Care Center, by the strength of the bond with the elderly and by spirituality in order to continue playing the challenging role of a family caregiver for a disabled elderly person. The study made possible to understand that, among these three supporting cornerstones for coping with the burden generated by the family caregiver role, the care model promoted by the Day Care Center was the intervenient variable in the process of improving the quality of life of the family caregiver-disabled elderly person binomial. This allowed the identification of the main category - moving from reclusion to partial freedom: the experience of family caregivers for disabled elderly persons assisted in a Day Care Center.

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Psychosocial Adjustment of In-Home Caregivers of Family Members with Dementia and Parkinson’s Disease: A Comparative Study

Parkinson s Disease ◽

10.1155/2020/2086834 ◽

2020 ◽

Vol 2020 ◽

pp. 1-10

Author(s):

María Cristina Lopes Dos Santos ◽

María Victoria Navarta-Sánchez ◽

José Antonio Moler ◽

Ignacio García-Lautre ◽

Sagrario Anaut-Bravo ◽

...

Keyword(s):

Parkinson’S Disease ◽

Parkinson's Disease ◽

Family Caregivers ◽

Psychosocial Adjustment ◽

Family Members ◽

Care Recipient ◽

People With Dementia ◽

Influential Variable ◽

Adjustment To Illness

Neurodegenerative diseases such as Parkinson’s and dementia are highly prevalent worldwide. People who suffer from these disorders often receive in-home care and assistance from family members, who must dedicate a considerable amount of time to the care recipient. The study of family caregivers’ psychosocial adjustment to the degenerative processes of both conditions is of interest due to the implications for the quality of life of both the care receiver and the caregiver, as well as other family members. This study compares the psychosocial adjustment of family members who care for people with dementia and Parkinson’s disease and identifies the main sociodemographic variables that affect the processes of adjustment to both conditions. To this end, the Psychosocial Adjustment to Illness Scale (PAIS-SR) and a sociodemographic form were administered to 157 family caregivers in Navarre, Spain. The results show that adjustment to the disease in family caregivers of people with Parkinson’s disease and dementia is, in general, satisfactory and related to variables such as place of residence, income, and employment status. The illness itself (Parkinson’s or dementia), however, is found to be the most influential variable in the level of psychosocial adjustment.

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Sociocultural Influences on the Feeling of Loneliness of Family Caregivers of People with Dementia: The Role of Kinship

International Journal of Environmental Research and Public Health ◽

10.3390/ijerph18094700 ◽

2021 ◽

Vol 18 (9) ◽

pp. 4700

Author(s):

Cristina Huertas-Domingo ◽

María Márquez-González ◽

Isabel Cabrera ◽

Samara Barrera-Caballero ◽

María del Sequeros Pedroso-Chaparro ◽

...

Keyword(s):

Social Support ◽

Family Caregivers ◽

Leisure Activities ◽

Care Process ◽

Sociocultural Factors ◽

Psychological Variables ◽

Factors Associated ◽

People With Dementia ◽

And Coping

The extent to which familism, dysfunctional thoughts, and coping variables contribute to explaining feelings of loneliness in caregivers, controlling for kinship, is analyzed. Participants were 273 family caregivers of people with dementia. Sociodemographic variables, familism, dysfunctional thoughts, coping strategies for requesting and receiving help, perceived social support, and leisure activities were assessed. The fit of a theoretical model for explaining the effect of cultural and psychological variables on feelings of loneliness in each kinship group was tested. No significant differences in the distribution of loneliness by kinship were found. Higher levels of familism are associated with more dysfunctional thoughts, that are linked to more maladaptive strategies for coping with caring (e.g., less social support and fewer leisure activities). This in turn is associated with higher scores in the feeling of loneliness. The model bore particular relevance to the group of daughters, husbands, and sons, yet not in the case of wives. Sociocultural and coping factors associated with the caring process seem to play an important role in explaining feelings of loneliness in caregivers. Sociocultural factors associated with the care process seem to play an important role in explaining feelings of loneliness in caregivers.

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ELDER ABUSE BY FAMILY CAREGIVER: DOES COGNITIVE IMPAIRMENT REALLY MATTER?

Innovation in Aging ◽

10.1093/geroni/igz038.1685 ◽

2019 ◽

Vol 3 (Supplement_1) ◽

pp. S449-S449

Author(s):

Elsie Yan

Keyword(s):

Cognitive Impairment ◽

Family Caregivers ◽

Behavioral Problems ◽

Older Persons ◽

Elder Abuse ◽

Psychological Aggression ◽

Care Recipient ◽

Physical Assault ◽

Factors Associated ◽

Significant Difference

Abstract Previous research suggested that cognitive impairment is a risk factor for elder abuse. Persons with dementia experience elevated risk of abuse as compared to the general aging population. The present study compared rates of abuse reported by family caregivers of older persons with and without dementia. A total of 693 family caregivers participated, among which 592 were providing care older persons with dementia and 101 were providing care to older persons without. Participants provided information on their demographic characteristics, care recipient physical functioning (Instrumental Activities of Daily Living), behavioral problems (Cohen Mansfield Agitation Inventory), caregiver stress (Zarit Burden Interview), emotional and instrumental social support, and abusive behaviors directed at the care recipients (Conflict Tactics Scale and Potentially Harmful Behaviors). Abuse is common in this sample: 46.8% reported potentially harmful behaviors, 52.7% reported psychological aggression, 11% physical assault, and 1.3% injury. No significant difference was observed between caregivers providing care to older persons with or without dementia (p>.05). A series of logistic regression was conducted to determine factors associated with abuse. Care recipient behavioral problems and caregiver burden were two prominent factors associated with potentially harmful behaviors and all forms of abuse. Behavioral problems are common in persons with cognitive impairment and many caregivers feel stressful managing them. It is plausible that cognitive impairments per sec do not increases risk of abuse, but the associated characteristics do. Helping family caregivers manage the caregiving situation and their expectation, positive appraisal and cognitive restructuring may help prevent elder abuse.

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Perceptions of Family Caregivers of People With Dementia Regarding Symptom Management and the COVID-19 Pandemic

Innovation in Aging ◽

10.1093/geroni/igab046.587 ◽

2021 ◽

Vol 5 (Supplement_1) ◽

pp. 154-155

Author(s):

Melissa Harris ◽

Marita Titler

Keyword(s):

Older Adults ◽

Family Caregivers ◽

Community Services ◽

Community Dwelling ◽

Care Recipient ◽

Future Research ◽

Service Access ◽

Psychological Responses ◽

People With Dementia ◽

The Impact

Abstract Nearly 98% of older adults with Alzheimer’s disease and related dementias (ADRD) experience behavioral and psychological symptoms of dementia (BPSD). Although BPSD are linked to caregiver burden, perceptions of family caregivers on the impact of BPSD and their experiences addressing them in the home are unclear, and little is known about the impact of the pandemic on these experiences. Study aims were to explore: 1) the experiences of family caregivers of community dwelling older adults with ADRD regarding BPSD and how they manage BPSD in the home, and 2) how the pandemic impacted family caregivers’ experiences, BPSD of their relatives, and BPSD management. A qualitative, exploratory approach was used; 21 family caregivers were interviewed virtually. Content analysis and constant comparative methods were used. Ten major themes emerged: 1) Emotional and psychological responses of caregiver, 2) Loss, 3) Anticipation, 4) Reliance, 5) Learning to caregive, 6) Rewarding, 7) Emotional and psychological responses of care recipient 8) Cognition of care recipient, 9) Care strategies, 10) Caregiver perspectives. Caregivers did not use terms “behaviors” or “symptoms”, instead they described their relatives’ and their own experiences interdependently. Caregiving challenges presented before the pandemic (e.g. equivocal effects of medications, increasing care demands), many of which were compounded by the pandemic. Future research should explore the experiences of caregivers from a range of backgrounds. Findings illustrate communication barriers exist between clinicians, community services, people with ADRD and their families which may be addressed through clinician education, family-centered care planning, and policies to expand support service access.

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