scholarly journals Dementia care-sharing and migration: An intersectional exploration of family carers' experiences

2022 ◽  
Vol 60 ◽  
pp. 100996
Author(s):  
Menal Ahmad ◽  
Jennifer van den Broeke ◽  
Sawitri Saharso ◽  
Evelien Tonkens
Keyword(s):  
Dementia Care ◽  
Family Carers ◽  
And Migration

scholarly journals What is the present role for general practitioners in dementia care? Experiences of general practitioners, patients and family carers in Portugal

Dementia ◽  
2020 ◽  
pp. 147130122097771
Author(s):  
Conceição Balsinha ◽  
Steve Iliffe ◽  
Sónia Dias ◽  
Alexandre Freitas ◽  
Joana Grave ◽  
...  
Keyword(s):  
Primary Care ◽  
General Practitioners ◽  
Social Contexts ◽  
Dementia Care ◽  
Family Carers ◽  
Primary Care Teams ◽  
Qualitative Interview Study ◽  
Framework Approach ◽  
Advanced Stages ◽  
Patient Relationships

Background Governments are being challenged to integrate at least part of dementia care into primary care. However, little is known about the current role of general practitioners (GPs) regarding dementia care, especially in countries that do not have dementia strategies in place. The aim of this study was to explore the experiences of GPs, persons with dementia and their family carers in Portuguese primary care settings, to better understand GPs’ contribution to dementia care. Methods A qualitative interview study of participants recruited from six practices in different social contexts within the Lisbon metropolitan area was carried out. Purposive sampling was used to recruit GPs, persons with dementia and carers. Interviews with GPs explored dementia care comprehensiveness, including satisfactory and challenging aspects. Interviews with patients and carers explored the experience of talking to GPs about cognitive impairments and related difficulties and the type of help received. Thematic analysis of interview transcripts was carried out using the framework approach. Results Five major themes were identified: GPs have a limited contribution to dementia care, the case of advanced dementia, doctor–patient relationships, doctor–carer relationships and management of chronic conditions other than dementia. Conclusion General practitioners seemed to contribute little to dementia care overall, particularly regarding symptom management. The exception was patients with advanced stages of dementia, given that specialists no longer followed them up. Remarkably, GPs seemed to be alone within primary care teams in providing dementia care. These findings strongly suggest that Portuguese primary care is not yet prepared to comply with policy expectations regarding the management of dementia.

The influence of individualistic and collectivistic morality on dementia care choices

2018 ◽  
Vol 26 (7-8) ◽  
pp. 2047-2057 ◽  
Author(s):  
Ingrid Hanssen ◽  
Phuong Thai Minh Tran
Keyword(s):  
Research Question ◽  
Family Members ◽  
Family Care ◽  
Dementia Care ◽  
Family Carers ◽  
Severe Dementia ◽  
Professional Help ◽  
The Balkans ◽  
The Family ◽  
Ethical Approval

Background: If collectivistic-oriented family carers choose professional care for dependents with dementia, they risk being stigmatised as failing their obligation. This may influence dementia care choices. Research question: How may individualistic and collectivistic values influence choices in dementia care? Method: Qualitative design with in-depth interviews with a total of 29 nurses, 13 family members in Norway and the Balkans and 3 Norwegian dementia care coordinators. A hermeneutic content-focused analysis was used. Ethical considerations: Ethical approval was obtained from the Regional Ethics Committee for Research, South-Eastern Norway, and the nursing homes’ leadership. Findings: Family domain reasons why institutionalisation of dependents with dementia was seen as a last resort: obligation towards family members, particularly parents; worry about other family members’ reactions and inability to cope with the care for the person with dementia. Social domain reasons: feelings of shame and stigma regarding dementia, particularly in connection with institutionalisation of family members. Discussion: Children’s obligation towards their parents is an important aspect of the morality of collectivistic societies. Institutionalising parents with dementia may cause feelings of guilt and shame and worry about being stigmatised and ostracised. To avoid blame and rejection, caregiver(s) try to keep the fact that family members have dementia ‘in the family’. The decision to accept professional healthcare for dependents with severe dementia or have them admitted to a geriatric institution was postponed as long as possible. Conclusion: Family care morality may constitute a significant barrier against seeking professional help for persons with dementia, a barrier based on the expectation that the family will care for their old, even when suffering from severe dementia. Hence, stigma and shame may significantly affect the provision of care. Culturally tailored information may encourage family carers to seek professional help before the disruptive influence of the disease makes institutionalisation the only feasible option.

Mentalization in dementia care: an autoethnographic account of a project worker’s experiences

2017 ◽  
Vol 21 (3) ◽  
pp. 147-156
Author(s):  
Bethany Luxmoore ◽  
Phil McEvoy
Keyword(s):  
Emotional Responses ◽  
Dementia Care ◽  
Project Manager ◽  
Family Carers ◽  
Content Type ◽  
Root Cause ◽  
Communicative Interactions ◽  
The People ◽  
People With Dementia ◽  
Embodied Experiences

Purpose Mentalization is a psychodynamic concept that can help us to understand our emotional responses to others. The purpose of this paper to illustrate how the concept of mentalization may be applied in dementia care. Design/methodology/approach An autoethnographic account of the author’s experiences (first author), working as a project manager in which the author used the concept of mentalization to pay close attention to how the author’s emotional responses to people with dementia influenced thier communicative interactions. Findings This paper outlines how the author processed the author’s own internal experiences in both mentalizing and non-mentalizing modes, as the author wrestled with feelings of conscious incompetence. In the non-mentalizing mode, the author was pre-occupied with the author’s own anxieties. The author struggled to relate to or make sense of the experiences of the individuals with advanced dementia that the author engaged with. Moving towards a mentalizing stance helped the author to attune to the embodied experiences of the people with dementia and recognise the reciprocal nature of our communicative interactions. Originality/value This paper illustrates the role that mentalization may play in developing natural and authentic strategies to support communicative engagement in dementia care. These strategies may be of potential value to family carers. Family carers who can maintain a mentalizing stance may be more able to respond in empathic, person- centred ways to people who are living with dementia. On the other hand, non-mentalizing responses may be a root cause of mis-understanding and emotional disengagement.

scholarly journals Experiences and nutrition support strategies in dementia care: Lessons from family carers

2014 ◽  
Vol 72 (1) ◽  
pp. 22-29 ◽  
Author(s):  
Lauren Ball ◽  
Sarah Jansen ◽  
Ben Desbrow ◽  
Kate Morgan ◽  
Wendy Moyle ◽  
...  
Keyword(s):  
Dementia Care ◽  
Nutrition Support ◽  
Family Carers ◽  
Support Strategies

scholarly journals Balancing care demands and personal needs: A typology on the reconciliation of informal dementia care with personal life based on narrative interviews

Dementia ◽  
2021 ◽  
pp. 147130122110083
Author(s):  
Sophie Gottschalk ◽  
Lydia Neubert ◽  
Hans-Helmut König ◽  
Christian Brettschneider
Keyword(s):  
Informal Care ◽  
Dementia Care ◽  
Personal Life ◽  
Family Carers ◽  
Narrative Interviews ◽  
Documentary Method ◽  
People With Dementia ◽  
Personal Needs ◽  
Person With Dementia ◽  
Care Demands

Finding a balance between care and personal needs is often challenging for individuals caring for a person with dementia. The present study aimed to understand how primary and secondary family carers of people with dementia perceive the reconciliation of informal care and their personal life throughout the course of care. Narrative interviews with 14 carers ( n=10 female, mean age: 48.79) from seven care networks were conducted. The interviews were analysed using the documentary method. The result was a relational type formation which comprises different process types: ‘Respect your boundaries, stay calm, but plan ahead’, ‘Acting strategic is making it work’, ‘Reflect the situation, deal with it, and pull it through’ and ‘There is no alternative, you have to live with it’. This typology was based on two related dimensions: the way people negotiate their own needs against the demands of care (prospective, strategic, reflective and limited) and the resulting attitudes towards reconciling informal care and personal life (accepting, withstanding and enduring). The results yield implications for practice, such as considering individual needs and the care network to provide effective support and promoting the importance of self-care behaviours to achieve a balance between care and personal life.

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