Physical symptoms commonly experienced by people with advanced dementia include pain, difficulties with hydration and nutrition, dyspnoea, and infection. Non-pharmacological approaches are often primary care and there are medications used as needed to meet maintenance goals. For patients in the terminal stage of dementia, parenteral administration of drugs is often, but not always necessary, due to swallowing problems.
Pain is common among people with advanced dementia, such as from concomitant illnesses, current or previous injuries, poor oral health, and bed pressure injuries. Problems in expressing or communicating the level of pain can lead to behavioral or psychological symptoms of dementia (BPSD) and thus improper prescription of antipsychotics in place of adequate pain relief. It can be detected using a pain tool such as the dementia-specific Abbey pain scale, as well as clinical assessment to identify pain in people with dementia.
In addition, constipation may occur in recyclable pain, such as improper wearing of tools and supports that help with hearing or movements, immobility, infection, and previous chronic pain history. Therefore, these should be taken into consideration. Once all this has been addressed, the patient’s pain should be reassessed. Important recommendations about pain management in dementia can be listed as follows:
- Body positioning
- Providing a comfortable and supportive seating or bed
- Environmental changes, such as adjusting the temperature or lighting, playing music
- Improving sleep
- Practicing spiritual or belief activities
- Social and cultural participation
If analgesia is indicated, a step-by-step approach following the general principles of the WHO analgesic ladder is recommended, starting with regular paracetamol. There is limited evidence to guide NSAID use in people with dementia, but they can be carefully considered in combination with paracetamol before stepping into an opioid.
• When accelerating treatment, expert opinion is that the WHO analgesic ladder (eg codeine or tramadol) 2. It is preferable to start with a low dose of strong opioid (morphine) in terms of efficacy and tolerability.
• There is limited data on opioid use in people with dementia, and there is uncertainty about its effectiveness and sensitivity to adverse effects in this group. Considering potential drug interactions, adverse effects should be monitored by administering low-dose and gradually increasing medication.
• Consideration should be given to alternative formulations (eg liquid) and routes of administration (eg subcutaneous or transdermal) for patients with swallowing difficulties.
Nutrition and Hydration
Advanced dementia is associated with a reduced desire to eat, forgetting how to eat or what food is, and a loss of ability to chew and swallow, which can result in reduced calorie intake and weight loss. Strategies that can help improve oral intake include:
• Ensuring that the patient has no underlying oral health problems and has good oral hygiene, such as prosthetic care
• Providing quality, attractively presented and catering meal options at multiple sensory levels to maximize cooking tips
• Providing foods appropriate to the patient’s cognitive level and their ability to swallow, such as pre-cut, softer or mashed foods, more frequent feeding with smaller portion sizes, feeding with finger-holding foods as the ability to use cutlery is lost
• Allowing more time for the person to eat in an environment that minimizes distraction.
• A swallowing assessment is often required to manually feed the person and to check safety; consulting a speech / language therapist if needed
• Oral nutritional supplements (e.g. Ensure or Fortisip) may be considered for patients who are malnourished and cannot maintain body weight through food intake alone. These should be given between meals, not instead of meals.
• Consider a care plan that may include consulting a dietitian for nutritional assessment and recommendations for strategies such as food fortification (e.g. with iron if deficient), meal timing / frequency, and oral nutritional support.
The incidence of dyspnea (shortness of breath) increases as people approach the end of life. Potential causes include aspiration, pneumonia, heart disease, chronic obstructive pulmonary disease, tumors, asthma, pain (e.g. rib or vertebral fracture), neuromuscular insufficiency, ascites, pleural effusion, anemia, sepsis, and anxiety. It may not always be possible to identify a treatable cause.
It can be difficult to assess dyspnoea in people with advanced dementia because these patients are often unable to self-report symptoms. Indicative signs and symptoms include increased heart and respiratory rates, use of accessory muscles, paradoxical breathing pattern (the abdomen moves with inspiration), restlessness, constant grunting, nasal flare, and fearful looking. The Respiratory Distress Observation Scale (RDOS) scores each of these parameters from zero to two points, and the total score from zero (no distress) to 16 (severe distress). Important suggestions for managing dyspnea:
• If possible, the underlying cause should be determined and relieved,
• Non-pharmacological interventions should be used to provide symptom relief. For example: Using a ventilator or fresh air on the face, breathing techniques and positioning are not routinely recommended as oxygen can cause irritation and distress, but if the patient is anxious and hypoxic, for example, oxygen saturation <90%, an oxygen trial may be appropriate.
Pharmacological interventions are:
• low dose oral morphine; Treatment should be started at a low dose (i.e. 2.5mg) and carefully titrated upwards to be effective.
Sedatives may be required intermittently or continuously in people with advanced dementia. Intermittent sedation is typically used to relieve psychomotor agitation. Continuous sedation (also called palliative sedation) is used only to reduce pain at the end of life when other causes have been addressed or when symptomatic treatments are ineffective. Continuous sedation usually uses much higher doses than intermittent sedation and is typically administered by expert palliative care clinicians. Medications for sedation include:
- Benzodiazepines, eg midazolam, lorazepam
- Soothing antipsychotics, eg levomepromazine
- Strong opioids such as morphine, oxycodone (it should only be considered if the patient is allergic or intolerant to morphine)