Families find themselves coping with a great deal of stress when a loved one is diagnosed with dementia. One major concern is how to provide the best quality of life as the condition progresses.
This is where palliative care plays a role in your loved one’s care plan. The goal of palliative care is to provide comfort, rather than to cure an illness. This is accomplished by relieving the most distressing symptoms and assisting caregivers with the patient’s day-to-day needs.
In this article, we’ll go over three things:
- The benefits of palliative care for people with dementia
- When to start palliative care for dementia patients
- Specific care needs that can be addressed by palliative care
#1: Benefits of Palliative Care for Dementia
Many people are familiar with palliative care for terminal conditions like cancer. It is also appropriate for patients with dementia and can begin long before end-of-life hospice care. Palliative care benefits patients and families in many ways:
- Palliative services can prevent the undertreatment of troubling symptoms as well as unnecessary overtreatments.
- Patients receiving palliative care have a higher probability of receiving adequate treatment for pain.
- Palliative care reduces patient distress and resistance to care. Patients may be able to reduce their reliance on anti-psychotics, anxiolytics and sedatives.
- Caregiver quality of life and family satisfaction often improve when palliative services are provided.
- Patients who receive palliative care have a lower probability of requiring hospitalization during the final days of life.
#2: When to Start Palliative Care for Dementia
Determining when to provide palliative care for advanced dementia is different from illnesses such as cancer. That’s because estimating life expectancy is more difficult than with other terminal conditions.
The time between initial diagnosis and death typically ranges from 8 to 10 years and can be as long as 20 years. As much as 40% of the patient’s time after diagnosis can be spent in the advanced stages of the condition. That means palliative or comfort care can last for years, long before the final days or weeks of life.
Patients with mild to moderate Alzheimer’s disease may benefit from medications that can delay or lessen the severity of symptoms. However, these medications are often less effective for late-stage Alzheimer’s and may even have serious side effects.
All of this means that determining the need for palliative care must be guided by factors other than life expectancy for patients with dementia. Instead, top priorities should focus on maximizing comfort and quality of life.
Advanced care planning is highly recommended in the early stages when patients are still able to make their wishes known. Health care providers can advise patients and families on what to expect as the disease progresses and determine care preferences ahead of time.
#3: Palliative Care Needs of Dementia Patients
Patient needs will change as dementia progresses, so modifications to palliative care techniques will be required. Here are some of the top priorities for those with advanced dementia:
- Recognizing signs of pain and distress
- Eating difficulties
- Trouble breathing
- Comfort and social needs
Recognizing Signs of Pain and Distress
People with advanced dementia cannot tell others if they are in pain or experiencing other symptoms. Not knowing the cause of a loved one’s distress makes it harder to provide the support they need.
One useful tool for assessing pain is known as Pain Assessment in Advanced Dementia, or PAINAD. It is based on the presence of five distinct indicators:
- Breathing difficulty
- Negative vocalizations
- Negative facial expressions
- Agitated body language
- Lack of consolability
In addition to adjusting pain medications, nonpharmacological treatments may include massage, exercise or heating and cooling packs. Patients may also respond to relaxation techiques, music therapy and rest.
Eating becomes more difficult as dementia progresses, which can lead to significant weight loss. As the end of life nears, families often notice the following symptoms:
- Reduced food intake
- Needing help with eating and drinking
- Difficulty swallowing
- Not chewing food enough before swallowing
- Keeping food in one’s mouth
- Spitting out food
Meals should be served in a quiet, relaxed environment. Allow plenty of time, and let the patient alternate between bites of food and taking a sip from their drink. Thick liquids, such as protein shakes, may be easier for those with trouble swallowing. Offer favorite foods that can be eaten by hand, and consider adapting the texture to be more pleasing. Smaller portions are easier to handle, and high-calorie supplements may help to maintain a healthy weight.
Finally, multple studies have shown that tube feeding does not typically prolong survival in advanced dementia. Feeding tubes do not generally improve nutrition or prevent aspiration, and may lead to a greater use of restraints to prevent the tube from becoming dislodged.
Simple ways to reduce the risk of infection are to treat small cuts quickly and keep the patient’s teeth and gums clean. Check for pressure sores frequently, and seek medical attention for deep wounds.
Respiratory and urinary tract infections (UTI) become more common in advanced dementia. Antibiotics are often useful for treating respiratory infections. However, they are often less helpful for UTIs in terms of survival or providing comfort near the end of life. In addition, overuse of antibiotics increases the risk of drug-resistant bacteria. It is important to consult with health providers as to whether an antibiotic is likely to be curative and whether it is likely to improve comfort when compared to palliative measures.
Breathing becomes more difficult as dementia advances. This can be exacerbated if your loved one develops pneumonia. Providing oxygen can help, as can sitting upright and leaning forward. You may also apply a cool, damp cloth to their face or moisten their lips. Encourage the patient to spend some time outdoors or sit near an open window when the weather is good. Finally, morphine may be helpful closer to the end of life.
There are many factors that contribute to incontinence in patients with dementia. These include cognitive and functional impairment, comorbid medical conditions and side effects of some medications.
One helpful strategy is to set up a consistent schedule for using the restroom. Limit the patient’s fluid intake before bedtime, and use disposable briefs and bed pads for accidents.
Comfort & Social Needs
Finally, here are some simple ways to enhance comfort and support to a loved one with advanced dementia:
- Difficulty moving: Your loved one may need help when transferring from bed to chair or when changing their position in bed. Special equipment such as a transfer belt or lift may also be needed.
- Preventing pressure sores: Range-of-motion exercises can help with comfort and in preventing pressure sores. Encourage the patient to change position in bed at least every two hours. A wedge-shaped cushion and pressure-reducing mattress are also helpful.
- Emotional support: Touch your loved one gently and speak soothingly to them. Even if they cannot understand your words, your presence will be comforting. Read aloud from their favorite books, play their favorite music or watch their favorite videos together. Take them for a stroll in the garden or look out the window with them. Encourage visitors when your loved one is feeling up to it.
At Crown Hospice, we understand the emotional toll it can take when a loved one has dementia. That’s why we’re here to provide the support you need so that you and your loved one don’t have to walk this journey alone.