New research investigates advancing dementia and its effect on care-home relationships

• Advancing dementia affects relationships between carers and those in their care
• It also affects relationships between those with dementia in care and their families, and the relationship between residents
• A better understanding of behaviour and behavioural change the key to sustaining good relationships
• Research the first to address the impact of a wide range of behaviours
• Findings welcomed by Care UK, the UK’s largest independent provider of health and social care, particularly in relation to staff recruitment and retention

​AS DEMENTIA advances it can in most cases change the behaviour displayed by those with the condition.

Such changes in behaviour can bring strain to a wide-ranging network of relationships – from those between people with dementia and their professional carers, between those with dementia and their families, and to relationships between residents in residential care homes – which in turn can affect the delivery of care.

New research published in the journal Dementia by researchers from the University of Chichester focuses on the effects of behavioural change due to dementia in a residential care home setting. Its findings are based on a survey of professional care-givers who shared their own experiences of the deterioration of the carer/cared-for relationship as dementia advances.

People living with dementia often experience a wide range of behavioural changes, from dramatic fluctuations in sleep patterns to problems eating, changes in mood, uncharacteristic sexual behaviour, aggression, a deterioration in interpersonal skills, self-care and temperament. The condition can also result in delusions, agitation, depression, anxiety, indifference and changes in motor behaviour.

Changes in behaviour have impact not just on the individual with dementia and those close to them – it can impact on professional care-givers. Previous research has focused primarily on aggression exhibited by the person living with dementia and its impact on family care-givers. This research breaks new ground by identifying a wide range of behaviours and examining their impact not just on family, but also on professional care-givers and other residents within the care home environment.

Professional care-giver participants in the survey identified the strain dementia-related behaviour change places on the relationship between themselves and those in their care. In their professional position they were also able to witness the deteriorating effect on inter-family relationships, and on the relationships between residents within the care home itself.

The general consensus among professional care-givers was that the deterioration of relationships with their charges was upsetting for them, and that they would welcome additional support and/or training to help them better understand the ramifications of behaviour change as the result of dementia. All recognised that a better understanding would result in achieving and sustaining good relationships.

Dr Antonina Pereira, (above), Co-Director of the Institute of Education, Health and Social Sciences at the University of Chichester, is co-author with colleague Katie Appleton of the research. She commented: “Professional care-givers have identified as part of their everyday practice an effective deterioration in relationships between themselves and residents in their care. Our findings point to the fact that professional care-givers would benefit from more intense and in-depth training, focusing on the understanding of behaviour change across the development of dementia. In our view such training should ideally place emphasis on the degenerative nature of dementia and the fact that its progression is likely to differ from person to person.”

Suzanne Mumford, Lead Quality Development Manager for Approach to Care and Dementia Services at Care UK, the UK’s largest independent provider of health and social care and which runs more than 100 care homes, commented: “At a time when the recruitment and retention of care and nursing staff is challenging the provision of health and social care in the UK, this research highlights the impact on professional caregivers of supporting people living with dementia with diverse and complex physical and psychological needs.”

She added: “The authors discuss the importance of developing communication skills through training. Care UK’s university-accredited Living Well with Dementia programme of training and coaching  provides all staff with training that includes a comprehensive understanding of the feelings that drive behaviours, this helps to build connection and relationships that promote trust, respect and inclusion. A broader understanding of the emotional and psychological dependency experienced by people living with dementia and how that affects the approach of both professional and family caregivers would benefit from further research to establish whether other factors can improve connection and reduce the incidence of caregiver burnout.”

For more about Dr Pereira’s research at the University of Chichester go to www.chi.ac.uk/staff/power/dr-antonina-pereira. More about the Institute of Education, Health, and Social Sciences is available at www.chi.ac.uk/education.

Photo credit Care UK

• Behavioural changes in dementia and their impact on professional care-givers: A grounded theory approach
• Katie Appleton and Antonina Pereira (Department of Psychology and Counselling, University of Chichester)
• doi: https://doi.org/10.1177/1471301217714654