Dementia patients are quite different from one another (heterogenous). They vary in the speed at which their disease progresses and also in their care needs. It can also be extremely difficult to predict the disease trajectory especially in advanced dementia. Nonetheless, a dementia patient will invariably have many palliative needs towards the end of life.
Is dementia a terminal illness?
Unlike cancer or other illnesses that have a more “defined” trajectory, it can be difficult to “certify” that the patient is dying due to dementia. Personally, I find that it could be the problem with our death certification system as the Coroner currently does not allow us to write dementia as a cause of death.
Generally when the patient is in stage 7C of the Functional Assessment Staging (FAST), we should be considering the palliative care needs of the patient .
- Unable to hold conversations
- Dependent in all ADLs
- Recurrent infections like pneumonias, UTIs and pressure ulcers
- Difficulties with nutrition and hydration necessitating the consideration of artificial feeding.
I have reproduced the full document below for your reference.
Common and significantly affects their quality of life. Doctors tend to underdiagnose and undertreat them as the patients can be very “quiet” when they have pain or they can also be extremely “agitated”.
Your job is to help us assess the patient. Try using the below scale.
Analgesics alone can significantly reduce agitated behaviour. In this RCT, agitation was reduced by 17% .
We should work through the WHO analgesia ladder to try to treat the patient’s pain, but just because it is a ladder doesn’t mean that we cannot “jump steps” when we deem the pain to be severe.
Last but not least, active listening skills and reflective listening skills can greatly reduce the patient’s pain.
Try reading this and watching this below.
Perhaps we can have a long workshop on this alone next time.
Use of antibiotics in infections
The use of antibiotics may prolong survival in advanced dementia but does not necessarily improve comfort and may lengthen the dying process. It can be a complex process requiring the doctor to think through each individual case and consider multiple factors.
For the nursing staff however, it should be emphasised that much can be done to relieve the symptoms of infection with paracetamol, mist morphine and oxygen.
Nutrition (tube feeding)
A 2009 cochrane review found no evidence that feeding tubes are effective in preventing malnutrition, aspiration pneumonia or pressure ulcers, and tube feeding was neither beneficial in reducing suffering or extending life.
We should focus instead of using high calorie supplements with other feeding interventions such as modified diets and assisted feeding to help them gain weight. We need to counsel families not to expect improvements in function or survival with any available form of feeding.
In end-stage dementia, oral feeding may be impossible and tastes and sips of food combined with mouth care may be used to promote comfort.
Resuscitation is likely to be futile in advanced dementia. Our patients will suffer unnecessarily with dismal rates of success if resuscitation is undertaken. Hence, it is important for you to help me screen out these patients and do the advanced care planning as soon as possible.
Needs of caregivers/caregiver stress
Our dedicated nurses and nursing aides care for our patients with dementia day in and day out and it is inevitable that we will have a strong emotional bond. It can be tiring for us when we see the conditions of patients deteriorate and when they eventually pass on. The start to coping with this is to face up to our own eventual death.
Dr Philip Yap’s written notes in Graduate Diploma in Palliative Medicine (Singapore)