The purpose of hospice is to ease a person’s pain and reduce suffering at the end of life. However, if a person can no longer communicate due to dementia, assessing their needs can be difficult.
Although you will use many of the same communications techniques you have already learned, a person in hospice who has dementia will probably be more challenging. Non-verbal communication skills are critical—especially if the person’s dementia is severe. This means you must develop good non-verbal communication skills but must also be able to understand and interpret your client’s non-verbal cues. All the things we take for granted and all the things we do to keep ourselves comfortable depend on the skill and compassion of caregivers.
Pain management is an important daily consideration and involves much more than medications. All sorts of things can cause pain: heat, cold, staying in one position for too long, lack of support in bed or in a chair, constipation, pressure on skin, lack of movement, and old injuries.
People with dementia can be experiencing just as much pain at the end of life as someone with cancer. Because pain is so difficult to assess in non-communicative patients, they often receive less pain medication than they need.
To complicate things, some people with dementia may refuse to take medications. Some may have problems swallowing a pill. Symptoms can change from day-to-day and a treatment that worked one day may not work the next day.
Because it is so hard to objectively decide how much pain medication is needed, care providers must rely on their ability to read non-verbal cues such as facial expressions, withdrawal, breathing patterns, and even anger and agressiveness. Family members can be a big help in interpreting when their loved one is in pain although they often lack information and training and fear making a wrong decision.
In a study of caregivers who were caring for a person with dementia who was also on hospice, researchers found that caregivers:
- Had difficulty communicating with patients
- Experienced a lack of consistent guidance from healthcare professionals
- Were uncertain about the cause and source of patients’ pain
- Experienced a great deal of secondary suffering
- (Tarter, Demiris, and Pike, 2016)