Causes of crises and appropriate interventions: The views of people with dementia, carers and healthcare professionals

Abstract

The aims of this study were to identify which factors may lead to crisis for people with dementia and their carers and identify interventions these individuals believe could help in crisis. Qualitative study using focus groups to compare the perspectives of people with dementia, family carers and healthcare professionals on causes of crises and crisis interventions. To help in a crisis, people with dementia were favourable towards support from family and friends, access to mobile phones and home adaptations to reduce risks. Carers were keen on assistive technology and home adaptation. Both carers and staff valued carer training and education, care plans and well-coordinated care. Staff were the only group emphasizing more intensive interventions such as emergency home respite and extended hours services. In terms of causes of crises, people with dementia focused on risks and hazards in their home, whereas family carers emphasized carer stress and their own mental health problems. Staff, in contrast were concerned about problems with service organization and coordination leading to crises. Physical problems were less commonly identified as causes of crises but when they did occur they had a major impact. Practical interventions such as home adaptations, assistive technology, education and training for family carers, and flexible home care services were highly valued by service users and their families during times of crisis and may help prevent hospital admissions. Specialist home care was highly valued by all groups.

Keywords:

• dementia
• crisis
• risks
• interventions
• hospitalization

Acknowledgements

The authors thank all the people with dementia who agreed to take part in this study, carers and healthcare professionals from North East London NHS Foundation Trust (NELFT) and Kent and Medway NHS and Social Care Partnership Trust. The author also thank Uniting Carers for People with Dementia UK; NELFT older people day hospitals and Dementia Resource Centre; the carer support groups within NELFT for helping to identify participants for our study and also allowing us to use their premises for the focus groups and they also thank Professors Livingston and King for commenting on an earlier version of this article.

This article presents independent research commissioned by the National Institute for Health Research (NIHR) under the Support at Home Interventions to Enhance Life in Dementia (SHIELD) research programme (Reference number: RP-PG-0606-1083). The views expressed in this publication are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health.