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Table 4 Example of an initiative of a palliative care unit for people with advanced dementia

From: Palliative care for people with dementia in the terminal phase: a mixed-methods qualitative study to inform service development

Interviewee: physician  
 Service description  
• Closed unit within a Dutch nursing home (part of a larger care organization with other nursing homes, hospice, and home care)
• Combined 15-bed unit with 7 general palliative care beds and 8 beds for people with advanced dementia; all with their own rooms, a shared living room, and a seat for family
• Bottom up initiative from a manager of small-scale living in the nursing home who felt that some people did not benefit from the activities they offered in the busy living room
• Compared to regular nursing homes, this unit additionally offered specialized nursing care called “care for people who are Powerless in Daily Living” (PDL).a A specialized therapist, but also the physiotherapist and occupational therapist worked according to the PDL-principles. Further, specialized chairs and mattresses facilitated comfortable positions. The unit had a snoozelen-bath with possibility for very immobile patients to soak in warm water, listening to music, scenting relaxing scents and looking at special lights. Additional staff and volunteers helped with feeding
• Use of pain assessment tools specific for dementia and other tools such as for delirium, but no written protocols
• Staff internal training in use of the tools and in palliative care more generally by a palliative nurse practitioner
• Funded extra staff via the more generous insurance budgets for the general palliative care beds
 
 Admission criteria and patient recruitment  
• Admission with advanced dementia from psychogeriatric (dementia) units elsewhere in the nursing home, from home and hospital. People were usually ADL-dependent and communication was very limited, but the main criterion was that they did not benefit from being part of a group. No other diagnosis was required
• Widely advertised (family brochure, admission office, general practice, hospital, talk to colleagues personally, consulted expert in communication). However, attempts to recruit patients with advanced dementia failed mainly because family and nursing staff were not willing to move the patient from a familiar environment (including familiar staff relationships) or did not recognize the person with advanced dementia not being comfortable there. Often it was not possible to convince them of benefits of the specialized care on the special unit
 
 Lessons learnt and shared in the interview  
• Beds remained empty because of the resistance to transfer at the end of life, which resulted in a lack of insurance funding and therefore the unit closed (had been in use for 2 years, 2013–2015)
• Families of patients who did move to the unit were extremely satisfied with the care
• People with advanced dementia do not fit well in a regular psychogeriatric nursing home department, but also do not fit well in a regular hospice. These people can benefit of a special approach or program
• Better start with only a few beds and a team approach to recruit patients and show people the benefits of this approach. Alternatively, not transfer people and focus on bringing this care to where people are
• What worked well is staff having expertise in both palliative and dementia care. The team spirit remained even if staff is working on a different unit now and PDL is provided on other units which is very comforting for people with contractures
• People seemed to live long (2 to 3 years), perhaps even longer because of individual needs being met, staff responding to subtle changes in comfort
• Physicians may feel that quality of life and comfort can be enhanced greatly through special nurse care giving
 
  1. aThe PDL-technique aims to bring optimal relaxation and comfort during washing and clothing, lying in bed and feeding. It comprises slow care in connection with the resident and using different ways of sensory stimulation: touch, scents, music, and snoozelen activities. Clothing is adapted to the stiffness and impaired moving ability of arms and legs. Sometimes supportive pain medication is used [43]