Family Members’ Perspectives on the Unmet Care Needs of People Living With Dementia in Nursing Homes

Figures & data

Table 2. Example of a data extract, with codes applied.

Data extract

Coded for

Mari (daughter): “At first, we had a home care service, at the beginning of the year XXXX. But because she had insulin for the diabetes, and dementia as well as other problems, there were many things to take care of. And so the home care made several mistakes too. And we had to go to emergency duty and all kinds of things, complaints and reports here and there, so the spring time was rather chaotic. And eventually the transition to a care facility happened so that my mother- she had hallucinations because of dementia. And one night my father called me and said that something was happening. He could not manage, and we called an ambulance. Mother was taken to the central hospital. And the staff thought it was just about having low blood sugar, and she stayed at the ward. And at the ward, they assessed her service needs, and we told them that she cannot return home, we cannot take care of her. But they were still going to return her home by force. But then there was a blessing in disguise, and it was that my father fell while walking in the forest with me and broke his shoulder and wrist. So he could not take care of my mother at home, and then they found her a temporary placement which eventually became permanent.”

1. Access to long-term care 1.1. Inadequacy of other care services 1.1.2. Unmet needs in home care service 1.2. Problems with informal care 1.2.1. Access to long-term care due to poor health of informal carer 1.3. Hospitalization before the transition to long-term care 2. Perceived quality of professional care and unmet care needs 2.1. Unmet needs and dissatisfaction with quality 2.1.1. Malpractice and neglect 3. Disagreements between family members and healthcare professionals 3.1. Debates and conflicts 3.1.1. Professionals ignore family members’ views

Figure 1. Thematic map of family members’ perspectives on unmet care needs of people with dementia.

Table 1. Sample characteristics.

Interviewed family members		Nursing home residents
Female	17	Female	9
Male	2	Male	10
Spouse	7	Alive	12
Adult child	12	Deceased	7

Data Availability Statement

Data not available/The data that has been used is confidential. Due to the sensitive nature of the questions asked in this study, informants were assured raw data will remain confidential and will not be shared. The article does not use previously published materials.