When is a person at end-stage of dementia?
• Not being able to move on their own
• Not being able to speak or make oneself understood
• Needing help with all activities of daily living
• Progressive issues in eating / swallowing problems
• Loss of appetite
• Significant weight loss
• Sleeping excessively
• Recurrent infections often with hospitalisations
Palliative care
Palliative care is the overriding principle of care in advanced dementia. As dementia is a terminal disease, death can be expected at some time during the advanced stages. During this time, the role of a caregiver focuses on upholding dignity and quality of life for the person with dementia.
The World Health Organization (WHO), 2002 has defined palliative care as: "An approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual."
The goal of palliative care is to provide the best possible quality life for the last phase of a person's life. As such, palliative care focuses on relieving symptoms such as pain, agitation, anxiety and poor oral intake, and family caregivers can play an active role in the care.
Communication
Communication is difficult for a person with advanced dementia due to their reduced ability to interact with their surroundings. Verbal expression becomes increasingly difficult and sentences tend to be shorter. Incomprehensible words may be added to the conversation.
In order to make communication easier, it is important for caregivers to understand that the person with dementia may have trouble understanding what is being said. Hence, non-verbal ways of relating through touch and one's loving presence becomes important.
Tips for effective communication:
• Always make eye contact with the person
• Call them by their preferred names.
• Use of gestures or touch whenever appropriate
• Use of pictures may be helpful
• Patient listening with interest and a cheerful disposition
Dysphagia
It is the term used to describe someone with swallowing problems. It is not uncommon for persons to have dysphagia in the later stages of dementia due to their impaired swallowing reflexes. A possible consequence of dysphagia is aspiration. Aspiration occurs when food or fluids go from the mouth into the person's windpipe (trachea) rather than the food tube (oesophagus). This can lead to choking or chest infection especially if recurrent and persistent. Some important advice includes:
• Do not feed a person who is sleepy or lying down.
• The person should be in an upright, sitting position during feeding
• Sit upright for at least 20 minutes after a meal.
• Observe closely for signs of dysphagia such as persistent cough or gurgling throat sounds after swallowing.
• Do not hurry the person. Give him time to chew and swallow before taking another spoonful.
• Do not take food in large mouthfuls.
• A speech and language therapist may recommend modifications to the diet e.g. soft, minced or pureed diet and thickened fluids.
Artificial nutrition and hydration
In very late stage dementia, the person can have severe difficulties with swallowing and may not maintain sufficient fluid and nutritional intake for bodily sustenance. Hence, caregivers are faced with the option of providing artificial nutrition.
Artificial nutrition can be delivered through a nasogastric (NG) or percutaneous endoscopic gastrostomy (PEG) tube. A NG tube involves the insertion of a feeding tube via the nose into the stomach while the latter is inserted directly into the stomach through the abdominal wall via a surgical procedure.
It is important to note that artificial nutrition will not:
- Reduce the risk of pneumonia.
- Improve survival or prolong life in people with advanced dementia.
- Prevent pressure ulcers.
- Improve functional status.
- Improve comfort or reduce suffering
However, artificial nutrition can help the person receive adequate hydration and nutrition and may help in weight gain.
Functional decline
In late stage dementia, weight loss and loss of muscle strength can be apparent. Generally, a person in the advanced stage of the disease has a low metabolic rate and is physically inactive. Prolonged immobility and bed rest can result in joint contractures and problems with skin integrity. It is useful to move the limb joints passively using range-of-motion exercises (can be taught by nurses & therapists). Regular movements not only help to prevent joint stiffness but can help to prevent pressure ulcers or bedsores.
Urinary incontinence
Urinary incontinence is a common problem in dementia. With progressive dementia, the person becomes less aware of his toileting needs and can hence wet himself without knowing. Other exacerbating factors include urinary tract infection, an enlarged prostate gland, drinking too much caffeinated beverages, impaired mobility and constipation. The following advice can be helpful:
• Bringing the person to the toilet at regular intervals (timed toileting) can help promote continence in the person. This is possible with effort and careful attention to the usual toileting habits of the person. The benefits of this include comfort and maintaining the dignity of the person in delaying the need for continence products such as diapers.
• If the person is using diapers, ensure regular diaper change to keep the area dry and clean.
• Use a skin protective / barrier cream to minimise skin irritation from soiled diapers.
Constipation
Constipation is common in older persons and especially people with dementia given their reduced awareness and relative immobility. Poor food, fibre and fluid intake are also contributory. Constipation causes discomfort and can worsen confusion and agitation.
It also makes passing urine more difficult and can precipitate urinary retention.
The following advice is useful:
• Ensure adequate hydration and intake of fruits and vegetables to aid in bowel movements
• If the person is not keen to drink plain fluids, other sources of fluid include soup, melted ice cream, juices or decaffeinated coffee or tea.
• Use of laxatives if necessary
• Record and monitor bowel movements and type of stool (See Bristol Stool Chart).
Skin care
When a person is bedbound and lying in the same position for prolonged periods, the risk of developing pressure ulcers (bed sores) is high. Pressure ulcers can cause significant pain and lead to potentially life threatening infections. The following can be done to prevent pressure ulcers:
• Turn or re-position the person lying in bed at least two hourly.
• If the person is still able to sit, sit him out of bed for about 30 minutes two or more times a day.
• Provide a pressure-relieving mattress
• Perform regular skin checks for redness as a sign of impending pressure ulcer development. Areas at high risk of developing pressure ulcers include the person's ears, shoulders, elbows, hips, heels, back and buttocks.
Next Chapter: MUSIC IN DEMENTIA
