Family caregivers' and professionals' experiences of supporting people living with dementia’s nutrition and hydration needs towards the end of life

Barrado‐Martín, Yolanda; Nair, Pushpa; Anantapong, Kanthee; Aker, Narin; Moore, Kirsten; Smith, Christina H.; Rait, Greta; Sampson, Elizabeth L; Manthorpe, Jill; Davies, Nathan

doi:10.1111/hsc.13404

Cited by 14 publications

(13 citation statements)

References 21 publications

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“… 31 This may involve the use of risk feeding and decisions to withhold or withdraw burdensome interventions, including ANH. Some families may find this difficult due to cultural beliefs or emotional unpreparedness, 32 , 33 which can be overlooked during discussions 34 , 35 and lead to conflict between family carers and staff.…”

Section: Discussionmentioning

confidence: 99%

A shared decision‐making model about care for people with severe dementia: A qualitative study based on nutrition and hydration decisions in acute hospitals

Anantapong

Sampson

Davies

2023

Int J Geriat Psychiatry

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Objectives: 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. Methods: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. Results: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. Conclusions: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.

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Section: Discussionmentioning

confidence: 99%

A shared decision‐making model about care for people with severe dementia: A qualitative study based on nutrition and hydration decisions in acute hospitals

Anantapong

Sampson

Davies

2023

Int J Geriat Psychiatry

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“…Therefore, cooperation among those living with the patients is essential for food support. The study by Barrado-Martín et al in 2022 [ 19 ] indicated the importance of professionals providing education and support to family caregivers for the nutrition of people with dementia. Therefore, the role of visiting staff, including visiting managerial dieticians, dental hygienists, and dentists, may be crucial in educating people about food support.…”

Section: Discussionmentioning

confidence: 99%

Nutritional Management in a 101-Year-Old Woman with Physical Inactivity and General Weakness: A Case Report

et al. 2023

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Japan has the world’s highest life longevity, and centenarian patients are no longer rare. However, sufficient information related to centenarians is not available. Herein, we report the case of a 101-year-old centenarian woman who recovered from extreme inactivity and general weakness, mainly through nutritional management at home, to understand instances of nutritional management in centenarians. The patient developed lethargy, with a rapid decline in activity levels and food intake. She was diagnosed with senility by a primary doctor. We concluded that she had no problems with feeding and swallowing and predicted that her motivation to eat had decreased. We planned an intervention that lasted three months. To reduce the risk of aspiration, we paid attention to her posture while eating. To stimulate her appetite, we increased the variety and color of food items. To consider both the texture of food and safety, we changed the form of foods from paste (IDDSI Level 4)-like to solid food of regular size as much as possible. We recommended that the patient consume her favorite sweet between meals to enjoy eating. Two and half months after the initial intervention, the patient’s inactivity and general weakness improved dramatically, which was recognized by her willingness to eat, laugh loudly, and hum, although she could not speak clearly. The patient finally was able to have dinner with her family.

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“…Family carers should be provided with clear goals of care and a palliative care plan to support eating and drinking at the end-of-life, for example, risk feeding, mouth care and positioning [ 36 ]. Expression of a commitment to continuing care and regular communication could also restore the hope of those involved and prevent guilty feelings towards the death of the person with dementia [ 34 , 37 ].…”

Section: Discussionmentioning

confidence: 99%

Communication between the multidisciplinary team and families regarding nutrition and hydration for people with severe dementia in acute hospitals: a qualitative study

2022

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Background 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. Objective 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. Design Qualitative semi-structured interview study. Setting Acute hospital in England. Methods 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. Results 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. Conclusions 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.

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Family caregivers' and professionals' experiences of supporting people living with dementia’s nutrition and hydration needs towards the end of life

Cited by 14 publications

References 21 publications

A shared decision‐making model about care for people with severe dementia: A qualitative study based on nutrition and hydration decisions in acute hospitals

A shared decision‐making model about care for people with severe dementia: A qualitative study based on nutrition and hydration decisions in acute hospitals

Nutritional Management in a 101-Year-Old Woman with Physical Inactivity and General Weakness: A Case Report

Communication between the multidisciplinary team and families regarding nutrition and hydration for people with severe dementia in acute hospitals: a qualitative study

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