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Palliative care for people with advanced dementia

Palliative care is used a lot with people with cancer but is not used much for people with advanced dementia.

We found nine suitable studies that involved 2122 people. Two studies were carried out in hospitals and seven in nursing homes or long‐term care facilities.

Key results

Six studies tested changes to the way care for people with advanced dementia is organised and delivered. Five studies found that these changes may increase comfort in dying, but problems with study design and differences in outcome between studies make this result very uncertain, so it is possible that overall they may make little or no difference. Changes to care organisation and delivery may also mean that people with advanced dementia are more likely to have a plan in place for their care, but this result came from only one study, and again we are very uncertain about it. Making changes to how care is organised and delivered probably has no effect on the use of non‐palliative approaches to care and may have little or no effect on whether discussions take place between people with dementia, their family caregiver, and their doctors and nurses on the nature and type of palliative care they would like to receive.

Two studies found that helping the person with dementia and their family to plan ahead probably makes it more likely that the person with dementia has a written document giving instructions on the types of treatments they want to receive (an advance care plan), and that they have spoken to their doctors and nurses about what they would like from their care. One of these studies also found that advance planning may mean that there is slightly more agreement between what the doctors and nurses believe are the care goals and what the person with dementia believes. However, based on one study, planning may not impact on how well family caregivers feel the person with dementia’s symptoms are managed.

Conclusions

Overall, the research done so far does not give a clear picture about how palliative care can best be used to help either the person with advanced dementia or their family. Little research has been done about people with advanced dementia, often because of ethical concerns. However, although it is hard to do research with people with dementia, more well‐designed studies are required to work out how palliative care can be used best in this special population.

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Review question

Can simulated presence therapy (SPT) treat problem behaviours, and improve quality of life for people with dementia?

Background

Dementia is an illness, most common among older people, in which memory and other brain functions deteriorate and people gradually become dependent on others for care. Many people with dementia, particularly in its later stages, show signs of distress at times, or behave in ways which are difficult for their caregivers to manage. There is a lot of interest in finding ways to treat this without using drugs. Simulated presence therapy is a type of treatment which has been used mainly in nursing homes. It involves playing a personalised video or audiotape recording of family members to the person with dementia when he or she is distressed or agitated.

Study characteristics

We looked for trials which compared SPT to usual care or to another treatment. Ideally, people with dementia should have been randomly allocated to one or other treatment, but we also included trials even if treatment allocation was not strictly random.

We found three trials which met our inclusion criteria. The 144 participants were all living in nursing homes. The majority were women with an average age of over 80 years and severe dementia. The way SPT was administered was different in each trial. All the trials used more than one comparison treatment, which differed between trials. The trials all attempted to measure an effect on agitated behaviours, but used different approaches.

Key findings

Because the trials were so different from each other, we were not able to pool the results. Individually, each trial reported different methods to assess the effect of SPT on behavioural problems and the results varied depending on the method used to measure the outcome.

None of the studies assessed quality of life, effect on daily activities, effects on caregivers, or how likely participants were to drop out of the study.

Quality of the evidence

The studies were small and all had problems with their methods which could have biased their results. Hence, we thought the overall quality of the evidence was very low, meaning we cannot be at all confident in the results.

Conclusion

Not enough high‐quality research has been done to allow us to judge whether SPT can help people with dementia who are distressed or agitated.