Family Integrity Among Older Caregivers of Relatives With Dementia

Guerra, Sara; Figueiredo, Daniela; Patrão, Marta; Sousa, Liliana

doi:10.1590/1982-43272663201603

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Articles • Paidéia (Ribeirão Preto) 26 (63) • Jan-Apr 2016 • https://doi.org/10.1590/1982-43272663201603 copy

Family Integrity Among Older Caregivers of Relatives With Dementia^* * Paper taken from the first author's doctoral dissertation under the fourth author' supervision and the second author' co-supervision, and the collaboration of the third author; the dissertation was defended in 2012, in the Doctoral Program of Gerontology and Geriatrics at the Universidade de Aveiro in collaboration with the Universidade do Porto.

Integridade Familiar em Pessoas Idosas Cuidadores de Familiares com Demência

Integridad Familiar en Cuidadores Ancianos de Familiares con Demencia

Authorship SCIMAGO INSTITUTIONS RANKINGS

Abstract

The construct of family integrity denotes that older persons' attainment of ego integrity is linked to family relationships. Family integrity is the positive outcome (overall satisfaction with life); disconnection (dissatisfaction) and alienation (estrangement) are the negative outcomes. This study focuses on elderly people who are primary caregivers of relatives with dementia, and examines their experience of events related to that role, which are perceived as being of influence on their sense of family integrity. The sample included 26 participants. Open-ended interviews were conducted. The interview transcripts were submitted to content analysis. The main findings suggest that caregivers who experience family integrity tend to embrace the new life demand associated with the caregiving role, while those tending towards disconnection struggle to maintain their pre-existing goals, and those experiencing alienation tend to feel helpless. Caring for a relative with dementia has an impact on multiple aspects of family life.

Keywords
adult development; dementia; caregivers; family relations

Characteristic		N
Gender
Female		16
Mean age in years		74.11±7.4
Marital status
Married		24
Divorced		1
Widowed		1
Education
No schooling		7
4 to 6 years of schooling		18
Higher education		1
Kinship with the person with dementia
Spouse		20
Children		4
Siblings		1
Mother-in-law		1
Length of time as a caregiver
1 to 2 years		5
3 to 5 years		8
More than 5 years		13

Domain	Questions
1. Family integrity (general)	Do you feel satisfied or at peace with your overall life and family relationships? What aspects of your family life are most/least satisfying? How do you deal with those aspects (negatives and positives)? What are your goals for the future in terms of your family and personal life? Although you may or may not see family members as much as you would like, do you feel close or connected to members of your family? If possible, tell me about one or two of your closer relationships.
2. Resolution of conflicts/losses	Do you have regrets about any of your family relationships? Do you have a sense of "unfinished business" with any of your family members? If so, have you tried to address this issue? How (if at all)? Are there any issues or problems that you wish to discuss with someone in the family? If so, what do you think could help you to accept or solve those issues?
3. Creation of meaning and legacy	What aspects of family tradition and material inheritances have you passed on to younger family members? What would you still like to share or pass on to others (material and/or symbolic)? Do you feel that you have a meaningful and respected place in your family? How will you be remembered by family members after you are gone? How would you like to be remembered? Are there still things you would like to do or say to influence your family's memories of you?
4. Transformation of relationships	How have your relationships with family members changed as you've gotten older? Do you think that your relationship with family members will change? If so, how? Are there family members whom you can count on for help or support if you need it? Is it hard for you to ask family members for help or support? Are there family members who count on you for help or support? Is it hard for others to ask you for help or support?

Categories	Definition
Integrity (general)
1. Frequency of contacts	Caregiving affects the frequency of contacts or meetings between caregivers and their extended family.
1.1. Increase	The frequency of contacts with members of the extended family increases, mainly due to caregivers' need for help in delivering support to the care receiver (e.g., transportation to medical appointments) which is provided mostly by adult children, but also by siblings.
1.2. Decrease	The frequency of contacts (visits) with the multi-generational family (mostly children) decreases because caregivers find it difficult to leave the care receivers by themselves and the extended family finds it difficult to deal with the dementia.
2. Difficulty in pursuing life projects	Caregivers feel that the demands of the care giving role (full-time occupation) prevent them from achieving personal goals and plans for their later life (spending more time with grandchildren, visiting family members more often, visiting their country of origin or their birthplace, more time for leisure).
Transformation of family relationships
3. Decrease in caregivers' reciprocity	Caregiving has a double consequence for caregivers: they ask for/need more help from family members (particularly children), and they receive fewer requests for help from family members, who note their lack of availability. Caregivers feel they do not (cannot) maintain reciprocal relationships with family members.
4. Emotional proximity	Caregivers feel that caring influences their emotional proximity to the family.
4.1. Increase	Caregivers' emotional proximity to the family increases, because the care giving task improves the family bond (belonging, sharing, understanding, and mutual help).
4.2. Decrease	Caregivers describe a decrease in their emotional proximity to the family (weakened sense of belonging), mainly because they feel that their family is not there for them.
5. Confrontation of loss and death	Providing care confronts the caregivers with the loss (it is no longer the same person ) and the impending death of the care receiver (usually, a significant and close relationship); as a consequence the caregiver is confronted with his/her own death.
Resolution of past losses and conflicts
6. Solving family conflicts	Influence of care giving on conflict or resentment resolution within the family.
6.1. Facilitate	Caregivers feel that the challenges, demands, and meanings of the illness and care giving tasks facilitate family conflict resolution and generate feelings of cohesion and support, diminishing possible resentments.
6.2. Difficult	Caregivers consider that the illness and associated care needs make it more difficult to resolve family conflicts: the caregiver has fewer opportunities to visit the relatives with whom s/he has a conflict. Conflicts may even be exacerbated and resentments may arise, particularly when the caregiver feels misunderstood: s/he is spending money on care and the family does not understand (often associated with inheritance); the family does not understand the caregiver's lack of time.
Creation of meaning and legacy
7. Family appreciation of caregiver's role	The caregiver feels that the family appreciates his/her role and commitment to the relative with dementia. The caregiver feels proud and respected by the family.
8. Dissatisfaction with grandparents' role	The caregiver experiences feelings of dissatisfaction and self-devaluation because s/he has no time to be with grandchildren and to pass on the symbolic legacy.

Universidade de São Paulo, Faculdade de Filosofia Ciências e Letras de Ribeirão Preto, Programa de Pós-Graduação em Psicologia Av.Bandeirantes 3900 - Monte Alegre, 14040-901 Ribeirão Preto - São Paulo - Brasil, Tel.: (55 16) 3315-3829 - Ribeirão Preto - SP - Brazil
E-mail: paideia@usp.br

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[1] ²Correspondence address: Liliana Sousa.Departamento de Educação, Universidade de Aveiro, Campus Universitário de Santiago, 3810-193. Aveiro, Portugal. lilianax@ua.pt