ORCID Profile
0000-0003-3190-4355
Current Organisation
Prince of Songkla University
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Publisher: Hindawi Limited
Date: 06-05-2021
DOI: 10.1111/HSC.13404
Abstract: The aim of this paper was to understand the needs of family caregivers and professionals supporting people living with dementia with eating and drinking difficulties towards the end of life and the strategies they use to overcome them. A total of 41 semi-structured interviews with family caregivers (n = 21) and professionals (n = 20) were conducted in London and surrounding areas of England. Interviews were audio-recorded and transcribed verbatim. Four themes were identified: caregivers accessing and seeking help, perceived priorities of care, professionals' supportiveness and educational role, and strategies. Caregivers often struggle as they are not aware of the eating and drinking difficulties associated with dementia's progression. Care can change over time with families prioritising a person's comfort towards the end of life rather than ensuring a particular level of nutrition. Mutual support is required by both professionals and caregivers to enhance the care of the person living with dementia. Cognitive difficulties are often behind initial eating and drinking challenges in dementia, whereas physical challenges take over towards the later stages. Flexibility and creativity are key to adapting to changing needs. There is a need to raise awareness of the eating and drinking challenges associated with the progression of dementia. Professionals can help caregivers embark on the transition towards focussing on comfort and enjoyment of eating and drinking near the end of life rather than nutrition. This is particularly relevant for those caring for a relative living at home. Caregivers' input is needed to tailor professionals' recommendations.
Publisher: Wiley
Date: 02-2023
DOI: 10.1002/GPS.5884
Abstract: To understand the decision‐making processes regarding eating and drinking for hospital patients with severe dementia and use this data to modify a decision‐making model about care for people with severe dementia. From January to May 2021, qualitative semi‐structured interviews were conducted with 29 family carers and hospital staff in England who cared for people with severe dementia during hospital admissions. Interviews were transcribed verbatim and analysed using codebook thematic analysis. We demonstrated a modified decision‐making model consisting of six stages of the decision‐making process: (i) identify a decision to be made (ii) exchange information and recognise emotions (iii) clarify values and preferences of all involved (iv) consider feasibility of each choice (v) share preferred choice and make a final decision and (vi) deliver the decision, monitor outcomes and renegotiation. From this study, decision‐making needed to be shared among all people involved and address holistic needs and personal values of people with dementia and family carers. However, hospital staff often made assumptions about the persons' ability to eat and drink without adequate consultation with family carers. The process was impacted by ward culture, professional practice, and legal framework, which might overlook cultural and personal beliefs of the persons and families. Treatment escalation plans could help inform stepwise treatments, create realistic expectations, and guide future decisions. Our decision‐making model provides clear stages of decision‐making processes and can be used to guide clinical practice and policy around care decisions for eating and drinking, which is often poorly supported.
Publisher: MDPI AG
Date: 09-06-2022
DOI: 10.3390/NU14122395
Abstract: Eating and drinking difficulties, such as loss of appetite and swallowing problems, are common in dementia, but little is known about the experiences of ethnic minority groups who are managing these difficulties at home. The purpose of our study was to explore the meaning of food, the impact of dementia on eating and drinking, and carers’ experiences of support. We undertook semi-structured interviews with 17 carers and people with dementia from ethnic minority backgrounds living in England, using thematic analysis to analyse the data. Food/drink had strong links to identity, culture and emotions. Providing culturally familiar foods, celebrating traditional festivals and supporting previous food-related roles promoted reminiscence, which encouraged the people living with dementia to eat and drink, as did social interactions, although these could lead to distress in those with more advanced dementia. Food choices were also influenced by carer strain, generational differences and the impact of health conditions. Despite a strong sense of duty to care for relatives at home, there was low awareness of community support services. The carers expressed a need for culturally tailored support for managing dementia-related eating and drinking difficulties at home. Healthcare professionals must provide contextually relevant advice to carers, being mindful of how cultural backgrounds can affect dietary choices.
Publisher: Oxford University Press (OUP)
Date: 11-06-2021
Abstract: Eating and drinking problems are common among people living with later-stage dementia, yet few studies have explored their perspectives. This study aimed to explore how people living with mild dementia understand possible future eating and drinking problems and their perspectives on assistance. Qualitative study using semi-structured interviews. Community. We conducted semi-structured interviews with 19 people living with mild dementia. Interviews were transcribed verbatim and analysed thematically. Five themes were identified: (i) awareness of eating and drinking problems (ii) food and drink representing an in idual’s identity and agency (iii) delegating later decisions about eating and drinking to family carers (iv) acceptability of eating and drinking options and (v) eating and drinking towards the end of life. For people living with mild dementia, possible later eating and drinking problems could feel irrelevant and action may be postponed until they occur. Fears of being a burden to family and of being treated like a child may explain reluctance to discuss such future problems. People living with mild dementia might wish to preserve their agency and maintain good quality of life, rather than be kept alive at later stages by artificial nutrition and hydration. For people with mild dementia, eating and drinking problems may seem unrelated to them and so get left undiscussed. Negative connotations regarding eating and drinking problems may hinder the discussion. The optimal time to discuss possible future problems with eating and drinking with people with mild dementia may need an in idual approach.
Publisher: British Medical Journal Publishing Group
Date: 12-0003
Publisher: SAGE Publications
Date: 07-02-2022
DOI: 10.1177/14713012211066674
Abstract: When family carers are more prepared for the end of the life of a person they care for, they report improved bereavement outcomes. Few studies have explored how carers prepare for the death of a person with dementia. We aimed to explore how carers for people with all stages of dementia experience preparing for end of life care and death. This was a mixed methods cross-sectional study. Family carers of people with dementia ( n = 150) completed a structured interview with validated scales, alongside questions about death preparedness and advance decisions. A sub-s le ( n = 16) completed qualitative interviews exploring their experiences of planning for end of life. We fitted logistic regression models to explore associations with preparedness, and thematically analysed qualitative data. We addressed practical and emotional preparation separately for 143 participants. Fifty seven percent of participants were very practically prepared for death, while only 29% were very emotionally prepared. Male carers were more likely than female carers to report being very emotionally and practically prepared. Higher engagement with healthcare professionals was associated with feeling very practically prepared although we found that formal discussions of end of life care issues with healthcare professionals did not impact carers’ feelings of preparation. Higher levels of dementia severity and carer depression were associated with feeling very emotionally prepared. Three qualitative themes related to practical and emotional preparation were identified: (1) ambiguity and uncertainty (2) support from the system and (3) how death is perceived by the carer. While most carers felt practically prepared for death, emotional preparation was much lower. Further research is needed to understand how engagement with healthcare professionals or other forms of social or emotional support could help carers, particularly female carers, to emotionally prepare for their relative’s death.
Publisher: Oxford University Press (OUP)
Date: 11-2022
Abstract: When a person with severe dementia is in hospital and has eating and drinking difficulties, communication between the multidisciplinary team and families can be challenging and lead to suboptimal care. To gain in-depth understanding about the experiences, views and needs of family carers and hospital staff, regarding communication and conversations about nutrition and hydration, for hospital patients with severe dementia. Qualitative semi-structured interview study. Acute hospital in England. From January to May 2021, semi-structured interviews were conducted with 29 family carers and hospital staff. Interviews were transcribed verbatim and analysed using reflexive thematic methods. Four overarching themes were developed: (i) prerequisites to initiating communication about eating and drinking (ii) communication aiming to develop agreed care plans (iii) difficulty discussing palliative and end-of-life care and (iv) needs of information and plans about future eating and drinking difficulties. Families tended to wait for hospital staff to initiate discussions but usually experienced frustration with delays and repeated conversations with different staff. Some staff felt unprepared to manage these conversations and found it challenging to work across the multidisciplinary team. During discharge processes, key information and care plans about eating and drinking were not regularly passed on to people involved to avoid unnecessary readmissions. In acute hospitals, family carers and hospital staff can have disjointed communications and conversations about nutrition and hydration for persons with severe dementia. Timely reassurance, ongoing discussions and clear information sharing will support communication between those involved.
Publisher: MDPI AG
Date: 25-03-2022
DOI: 10.20944/PREPRINTS202203.0334.V1
Abstract: Eating and drinking difficulties are common in dementia, but little is known about the experiences of ethnic minority groups managing these difficulties at home. We undertook qualitative semi-structured interviews, exploring the meaning of food, the impact of dementia on eating and drinking and carers& rsquo experiences of support. Interviews were audio-recorded and transcribed verbatim. We interviewed 17 carers and people with dementia from ethnic minority backgrounds, using reflexive thematic analysis to analyse data. Food/drink had strong links to identity, culture and emotions. Providing culturally familiar foods, celebrating traditional festivals and supporting previous food-related roles promoted reminiscence, which encouraged people with dementia to eat and drink, as did social interactions. However, these strategies sometimes led to distress in those with more advanced dementia. Food choices were also influenced by carer strain, generational differences and the impact of health conditions. Despite a strong sense of duty to care for relatives at home, there was low awareness of community support services. Carers expressed a need for culturally tailored support for managing dementia-related eating and drinking difficulties at home. Healthcare professionals must provide contextually relevant advice to carers, being mindful of how cultural backgrounds can affect dietary choices.
Publisher: Springer Science and Business Media LLC
Date: 12-2020
DOI: 10.1186/S12877-020-01931-Y
Abstract: This systematic review aimed to explore the process of decision-making for nutrition and hydration for people living with dementia from the perspectives and experiences of all involved. We searched CINAHL, the Cochrane Library, EMBASE, MEDLINE and PsycINFO databases. Search terms were related to dementia, decision-making, nutrition and hydration. Qualitative, quantitative and case studies that focused on decision-making about nutrition and hydration for people living with dementia were included. The CASP and Murad tools were used to appraise the quality of included studies. Data extraction was guided by the Interprofessional Shared Decision Making (IP-SDM) model. We conducted a narrative synthesis using thematic analysis. PROSPERO registration number CRD42019131497. Forty-five studies were included (20 qualitative, 15 quantitative and 10 case studies), comprising data from 17 countries and 6020 patients, family caregivers and practitioners. The studies covered a range of decisions from managing oral feeding to the use of tube feeding. We found that decisions about nutrition and hydration for people living with dementia were generally too complex to be mapped onto the precise linear steps of the existing decision-making model. Decision-making processes around feeding for people living with dementia were largely influenced by medical evidence, personal values, cultures and organizational routine. Although the process involved multiple people, family caregivers and non-physician practitioners were often excluded in making a final decision. Upon disagreement, nutrition interventions were sometimes delivered with conflicting feelings concealed by family caregivers or practitioners. Most conflicts and negative feelings were resolved by good relationship, honest communication, multidisciplinary team meetings and renegotiation. The decision-making process regarding nutrition and hydration for people living with dementia does not follow a linear process. It needs an informed, value-sensitive, and collaborative process. However, it often characterized by unclear procedures and with a lack of support. Decisional support is needed and should be approached in a shared and stepwise manner.
Publisher: Wiley
Date: 17-01-2023
DOI: 10.1111/HEX.13672
Abstract: Using co‐design processes, we aimed to develop an evidence‐based decision guide for family carers and hospital professionals to support decision‐making about eating and drinking for hospital patients with severe dementia. Following a systematic review, we interviewed people with mild dementia, family carers and hospital professionals in England. We then held co‐design workshops with family carers and hospital professionals. In parallel with the workshops, we used a matrix to synthesize data from all studies and to develop a decision guide prototype. The prototype was iteratively refined through further co‐design workshops and discussions among researchers and Patient and Public Involvement (PPI) representatives. We conducted user testing for final feedback and to finalize the decision guide. Most participants acknowledged the limited benefits of tube feeding and would not use or want it for someone with severe dementia. However, they found decision‐making processes and communication about nutrition and hydration were emotionally demanding and poorly supported in acute hospitals. The co‐design groups developed the aims of the decision guide to support conversations and shared decision‐making processes in acute hospitals, and help people reach evidence‐based decisions. It was designed to clarify decision‐making stages, provide information and elicit the values references of everyone involved. It encouraged person‐centred care, best‐interests decision‐making and multidisciplinary team working. From user testing, family carers and hospital professionals thought the decision guide could help initiate conversations and inform decisions. The final decision guide was disseminated and is being used in clinical practice in England. We used rigorous and transparent processes to co‐design the decision guide with everyone involved. The decision guide may facilitate conversations about nutrition and hydration and help people reach shared decisions that meet the needs and preferences of people with severe dementia. Future evaluation is required to test its real‐world impacts. People with mild dementia, family carers and hospital professionals contributed to the design of the decision guide through the interviews and co‐design workshops. PPI members helped design study procedures and materials and prepare this manuscript.
Publisher: British Medical Journal Publishing Group
Date: 03-2021
Location: United Kingdom of Great Britain and Northern Ireland
Location: United Kingdom of Great Britain and Northern Ireland
No related grants have been discovered for Kanthee Anantapong.