Focus group discussions with family caregivers
Recruitment of participants
Convening of the focus group sessions
Recruitment of experts and identifying relevant initiatives
Convening of the interviews
• Can you tell about your service? (cues: hands-on or consultation, to what extent is it multidisciplinary care, covering palliative care domains such as any spiritual care), what is different compared to “usual care”? (e.g., any use of assessment tools, more staff, peaceful environment, staff training). How did it start, whose idea was it?
The transition and possible related barriers
• Selection of patients, eligibility for the program
• How is a transfer to another place, or a referral to palliative care that is provided where people are, being experienced by patient, family and health care professionals?
• What is the public image of this type of care (also as compared to, e.g., nursing home care) and how do you call this type of care in encounters with family and patient?
Pros and cons
• What works well for these people with dementia, and why?
• What could be improved, how so?
Context of usual care in the Netherlands
Ethics and confidentiality
Evidence from EAPC recommendations
Domain 1. Applicability of palliative care (1/4 recommendations)
1.2 Improving quality of life, maintaining function and maximizing comfort, which are also goals of palliative care, can be considered appropriate in dementia throughout the disease trajectory, with the emphasis on particular goals changing over time.a
Domain 2. Person-centred care, communication, and shared decision making (0/6 recommendations)
Domain 3. Setting care goals and advance planning (1/7 recommendations)
3.5 In more severe dementia and when death approaches, the patient’s best interest may be increasingly served with a primary goal of maximization of comfort.
Domain 4. Continuity of care (1/4 recommendations)
4.1 Care should be continuous; there should be no interruption even with transfer
Domain 5. Prognostication and timely recognition of dying (1/2 recommendations)
5.2 Prognostication in dementia is challenging and mortality cannot be predicted accurately. However, combining clinical judgement and tools for mortality predictions can provide an indication which may facilitate discussion of prognosis.
Domain 6. Avoiding overly aggressive, burdensome, or futile treatment (6/6 recommendations)
6.1 Transfer to the hospital and the associated risks and benefits should be considered prudently in relation to the care goals and taking into account also the stage of the dementia.
6.2 Medication for chronic conditions and comorbid diseases should be reviewed regularly in light of care goals, estimated life expectancy, and the effects and side effects of treatment.
6.3 Restraints should be avoided whenever possible.
6.4 Hydration, preferably subcutaneous, may be provided if appropriate, such as in case of infection; it is inappropriate in the dying phase (only moderate consensus).
6.5 Permanent enteral tube nutrition may not be beneficial and should as a rule be avoided in dementia; skilful hand feeding is preferred (only moderate consensus).
6.6 Antibiotics may be appropriate in treating infections with the goal of increasing comfort by alleviating the symptoms of infection. Life-prolonging effects need to be considered, especially in case of treatment decisions around pneumonia.
Domain 7. Optimal treatment of symptoms and providing comfort (4/6 recommendations)
7.1 A holistic approach to treatment of symptoms is paramount because symptoms occur frequently and may be interrelated, or expressed differently (e.g., when pain is expressed as agitation).
7.2 Distinguishing between sources of discomfort (e.g., pain or being cold) in severe dementia is facilitated by integrating views of more caregivers.
7.3 Tools to assess pain, discomfort and behaviour should be used for screening and monitoring of patients with moderate and severe dementia, evaluating effectiveness of interventions.
7.5 Nursing care is very important to ensure comfort in patients near death.
Domain 8. Psychosocial and spiritual support (2/4 recommendations)
8.3 Religious activities, such as rituals, songs, and services may help the patient because these may be recognized even in severe dementia.
8.4 For dying people, a comfortable environment is desirable.
Domain 9. Family care and involvement (3/8 recommendations, of which 1 only in part)
9.2 (in part) Families may need support throughout the trajectory, but especially upon diagnosis, when dealing with challenging behaviour, with health problems, with institutionalization, with a major decline in health, and when death is near.
9.7 Bereavement support should be offered.
9.8 Following the death of the patient, family members should be allowed adequate time to adjust after often a long period of caring for the patient.
Domain 10. Education of the health care team (0/2 recommendations)
Domain 11. Societal and ethical issues (3/8 recommendations, of which one only in part)
11.3 Collaboration between dementia and palliative care should be promoted.
11.6 Economic and systemic incentives should encourage excellent end-of-life care for patients with dementia.
11.8 (in part) National strategies for dementia, for palliative care, end-of-life care, and for long-term care should each include palliative care for dementia patients. Similarly, policy making on palliative care and long-term care settings should attend to dementia.
Family views from focus group discussions
“What I think is very important is that in the last stage there is good communication between yourself and the nursing staff. That you know exactly, what is going on? And that you also ask: could we do it differently, could we do it this way, that way? What can I actually do and what should I definitely not do? And that you are being guided in that process.”
“And absolutely no different people taking turns in caring for him. That is confusing. You just cannot do that. I would never want that to happen.”
“and then there is no need for a hospice, since a hospice would mean another transfer” [in addition to transfer to the nursing home]. Another, in response: “When you are already so confused. And since this already takes its natural course. R [her husband] was there for seventeen months and he just went out like a candle.” Yet another, with a home-living husband, in response: “we have already decided, we are not going to move. No moving, no matter what. No way. As long as he is there. Because this is familiar! Or if somebody has reached his final days, then he should not be taken from his environment. This does happen, it happens often in nursing homes. I know that. That is terribly confusing. You just cannot do that.”
But if you already have that bond established before, then nothing extra has to be done. Then it’s just a matter of trust. The nursing staff becomes - … and this may sound a bit overdone, but they become part of your family in a way.
“That was why it felt like home for me, and why it felt like home for my daughter, who also stayed there during the last couple of days.”
Initiatives-expert interviews about special services
The fifteen initiatives
Number of initiatives
Target population of the initiative/enrollment criteria
dying or life expectancy of at most 6 months
advanced dementia (and continued until death)
earlier possible (and continued until death)
consultancy, outreach, community
special nursing home department
hospice (institutional, inpatient)
combined hospice, and consultancy, outreach, community
nursing home center of excellence
special nursing home program
Phase of the initiative
failure/changed/no longer exists
Any formal description (such as a family brochure, scientific article)
not (yet) available
Origin of the initiative/lead
hospice/palliative care for other diseases
dementia/institutional long-term care
• 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
Interviewees: two nurses
• Palliative home care organization (“equipe”) in Flanders which also covers nursing homes
• A nurse consultant is the coordinator who visits and supports patient, family and the regular (home) care staff. They do not take over the care (the GP remains in charge), but they support others (the environment) to provide palliative care. The nurse is part of the equipe’s multidisciplinary team but because of a pluralistic stance, no spiritual caregiver is directly attached to the team. Two nurses specialize in outreach to nursing homes, building relationships with staff; no hands-on care is provided, but for occasionally help with technically challenging nursing procedures
• The initiative to also serve nursing homes was taken by this particular care organization decades ago and was reinforced by national policy afterwards
• Compared to regular nursing home care: broad expertise in palliative and end-of-life care; compared to regular palliative care: experience in nursing homes
• The team uses the nursing homes’ tools and protocols, if available, to not interfere with existing procedures
• Staff is trained in palliative care (yearly refresher courses) and staff members specialized in nursing homes are trained with extra courses about dementia care and communication with dementia patients. Staff caring for patients (without or with dementia) at home do not receive special training in dementia, but if logistics allow, those specialized in nursing home care may attend a patient with dementia in the community
• Funding by a fixed sum which means care is flexible and can be provided as needed for the individual patient no matter the number of visits
Admission criteria and patient recruitment
• Life expectancy at most 2 months but the service continues if patients outlive the 2-month funding limit
• The criterion on life expectancy may reinforce misperceptions of palliative care as terminal care; however, relabelling of palliative care may not be the solution; rather, better explain palliative care as care that is different from a helpful, additional perspective rather than maximum care which may not be optimal care
Lessons learnt and shared in the interview
• Building personal relationships between the nurse coordinator and nursing home staff and the GP is very helpful, and there may be stages in the relationships. Initially, there has been resistance when the nurse became involved in a team of nurses and GP, with “their patient”. Experiencing how helpful the service is, may increase use even to the extent of overuse. At that point, it is important to encourage staff to learn to practice palliative care themselves
• Still, the nurse consultant really has time to analyse the situation and develop a “helicopter view” which is difficult for staff in charge of providing the everyday hands-on care
• Spiritual care is sometimes still neglected, also regarding needs of patient and family from different cultures or traditions
• Searching for a consensus on care and treatment in the difficult situation of the patient unable to confer his or her preferences, is a major benefit of this service. Sometimes it takes time while the time window is limited; it may help if GPs have initiated advance care planning earlier and for this also increased public awareness is needed
• The nurse also bridges practice between nursing homes as they confer tips to other nursing homes and link up homes that sometimes operate solitarily
Negative representations and stigma
Prerequisites/requirements: what we need as a basis for good terminal care in dementia
− Continuity of all aspects of care. Most important: relational continuity. Also, try not to change environment (physical and social environment) but strengthen/honor the person’s identity
− Optimal communication may be promoted by at least one central person (“a linchpin;” whether from outside, consultation services, or a coordinator from within a nursing home) who can analyse the situation and connect people (family and professional caregivers)
− Flexibility and open lines for communication between professionals
− People around who can take time (nursing staff and volunteers)
− Selected staff dedicated to optimize comfort for people dying with dementia
− Integrate expertise in dementia and palliative care, in a person as well as within a team. Therefore, need staff training and commitment so that they master both dementia and palliative care approach. At the least, they should have a basic level of understanding.
Perceived benefits – what has been achieved
− Good communication, raising sensitive issues, addressing stereotypes and fear, resulted in families being satisfied with choice for the services, in retrospect
− Respectful care for both patient and family
− Creating a homely environment for people with dementia and their family members
− Bringing comfort and good symptom management
− Withholding of futile curative care (in some countries, especially so in the Netherlands)
− Some development and description of services, protocols and tools for dissemination.
Challenges – what still needs to be solved or requires ongoing work
− Bring optimal care to where people are without intruding in familiar relationships
− Right balance of social and medical services
− Address widespread education needs, especially signaling skills of frontline (nursing) staff
− Funding mechanisms, especially for extra staff time or organizing volunteer services
− Explain palliative care and combat misperceptions of family and staff, and perhaps the general public, of what palliative care can do
− Work on more positive representation of nursing homes
− Describe and define best practice in detail such as use of which protocols, tools etc. and research into its effects and the most effective elements
− Best practice development as a project which hopefully becomes superfluous in time.