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

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.

Automated summary

This study interviewed 29 family carers and hospital staff in England to understand the decision-making processes regarding eating and drinking for hospital patients with severe dementia. A modified decision-making model consisting of six stages was proposed, emphasizing the importance of shared decision-making and addressing the holistic needs and personal values of individuals with dementia and their family carers. The study found that hospital staff often made assumptions without consulting family carers, highlighting the need for improved communication. The decision-making process was influenced by ward culture, professional practice, and legal framework, suggesting the importance of considering cultural and personal beliefs. Treatment escalation plans could help inform stepwise treatments and guide future decisions.