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Small group homes are better for many dementia patients and their families

Maastricht, The Netherlands (September 15, 2011) – Small group homes for people with dementia provide good quality care and a domestic environment where people can live as individuals and families can get involved. But tension can arise when it comes to deciding who takes responsibilities for certain practical and caring tasks.

Those are the key findings of a study of two group living care homes in the Netherlands, published in the September issue of the Journal of Clinical Nursing.

"It’s estimated that 80 million people worldwide will suffer from dementia by 2040" says Ezra van Zadelhoff from Maastricht University. "Up until now, traditional care for people with dementia has mostly been provided in large nursing homes.

"However, a number of countries are increasingly providing care in small group homes, which offer a more domestic environment focusing on normal daily life. These include group living concepts in the Netherlands, Sweden, Germany and Japan.

"Our study focused on two group living units that had been established for approximately 30 months, each providing care for ten residents with dementia. Both were located in the grounds of a traditional large-scale, non-profit making nursing home in an urban area in southern Netherlands."

The units both centre around a communal living room and kitchen. Eight residents have a private bedroom with their own furniture, 12 share a bedroom with someone else and the units are both decorated to create a homely feel.

All residents require 24-hour care and this is provided by nine nursing staff (7.2 full-time equivalents) aged from 20 to 60 years, with experience in geriatric care. Nursing staff work with the residents to perform household tasks like washing, cleaning and preparing meals in the kitchen and organise activities like walking, exercises and singing.

A multidisciplinary team – nursing home physician, psychologist, physiotherapist and occupational therapist – are involved as required. Both units adhere to a ‚home for life‘ principle, with residents staying there until the end of their lives.

The research team carried out 32 hours of observation over eight days and carried out in-depth interviews with five residents, four family members and four staff.

The key headline findings and observations included:

Residents felt at home and most gathered in the living room during the day to talk, drink coffee or read. Everyday activities provided stability and clarity. People were also able to get involved in familiar activities, like laying the table or washing-up, and this helped them to maintain their identity and feel more at home.

"I can go to my room when I like. But I don’t often do so, I prefer to stay in the living room with others."

"I always do the washing here. I always did this at home as well."

Family members were able to get more involved in the group home than they could do in a nursing home. They were treated as members, rather than visitors, had a key and tended to visit more regularly, often helping with personal care and chores. Some family members found this level of involvement more difficult than others and this could lead to tension. But most were happy to visit, get involved in everyday activities at the home and take their relatives to medical appointments, church or the hairdresser, as required.

"It is like being at home. For the visitors this is far more pleasant."

"My mother is at home here. In the traditional unit there were many people who did not know each other. Here she knows everybody."

Nurses built good relationships with the residents and were able to provide individual care tailored to their needs. However, this could make them feel more emotionally attached and compromise their clinical or professional distance. In most cases they were able to work with family members to provide aspects of personal care, but in some cases there were disagreements about who should be responsible for some care.

"As a staff member I feel that there is more engagement compared with regular care. When something is the matter with a resident I feel more involved, more close."

"People get on well with each other, experience the group as a household, we live as a family."

"The findings of our study indicate that the key to providing person-centred care for people with dementia is to enable people to be themselves and live in an environment where they and their families can get involved in normal daily activities" says Ezra van Zadelhoff.

"However the model is not without its problems. Nursing staff get more involved with residents and this can conflict with their clinical and professional distance. And the families in our study varied in how much they wanted to get involved in the care provided by the home, which sometimes led to tension."

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Notes to Editors

Good care in group home living for people with dementia. Experiences of residents, family and nursing staff. van Zadelhoff et al. Journal of Clinical Nursing. 20, p2490-2500. (September 2011). doi: 10.1111/j.1365-2702.2011.03759.x

The Journal of Clinical Nursing (JCN) is an international, peer reviewed, scientific journal that seeks to promote the development and exchange of knowledge that is directly relevant to all spheres of nursing and midwifery practice. The primary aim is to promote a high standard of clinically related scholarship which supports the practice and discipline of nursing. JCN publishes high quality papers on issues related to clinical nursing, regardless of where care is provided. This includes – but is not limited to – ambulatory care, community care, family care, home, hospital, practice, primary and secondary, and public health. http://wileyonlinelibrary.com/journal/JOCN

Maastricht University, 15.09.2011 (tB).