Caring for a hospice patient with dementia
By Lauri Weiss, CRNP
People with dementia have special needs, which can pose unique challenges for their caregivers, especially at end-of-life. I am often asked for advice about behavior management for dementia patients, whose behavior can be unusual and unpredictable. There are a number of behavior problems associated with dementia; these include paranoia, restlessness, irritability, hallucinations (seeing, hearing or feeling things that are not there), uncharacteristic cursing, threatening language, confusion and physical aggression.
Dementia is the loss of mental functions, including thinking, memory, reasoning, learning, language and decision-making. Dementia is not a disease itself, but a group of symptoms that are caused by various diseases or conditions. Symptoms can also include changes in personality, mood and behavior. There are several possible causes of dementia, including:
- Diseases that cause nerve damage or loss (such as Alzheimer’s, which is the most common cause of dementia; Parkinson’s and Huntington’s)
- Diseases that affect blood vessels (such as stroke)
- Toxic reactions
- Nutritional deficiencies
- Infections that effect the brain and spinal cord
- Head injury
Dementia caused by nervous system disease, especially Alzheimer’s, is increasing in frequency. About 5% to 8% of people over the age of 65 have some form of dementia, and this number doubles every five years above that age.
Behavior management for people with dementia can be challenging. Often agitation is triggered by a change in environment, fear, or fatigue. For example, the person with dementia may become anxious around family members or friends, whom he or she may not recognize, or in situations that differ from the normal routine. This may result in withdrawal from social interaction, irritability, anger and/or aggressive behavior. Here are some tips for managing these changes in thinking and behavior:
- Be consistent. Try to minimize any changes in surroundings or daily routine.
- Keep it simple. Follow simple routines and avoid situations that require the person with dementia to make decisions (which can be frustrating and anxiety provoking).
- Simplify statements. It may help to simplify or re-word statements or requests if the person with dementia does not understand. Try to be patient!
- Gently remind. Help the person with dementia maintain his or her orientation by naming events, reminding him or her of the date, day, time, etc.; and repeating the name of people with whom he or she has contact.
- Reassure. Reassure the person with dementia every day, even if he or she does not respond. Use a quiet voice and be kind and affectionate.
- Be calming. If the person with dementia becomes agitated or aggressive, try calming him or her with reassurance and gentle touch, by playing music or a video or reminiscing about family or activities he or she once enjoyed.
- Identify triggers. Try to identify and then avoid any actions, words or situations that may “trigger” inappropriate behavior.
- Adapt the environment. To minimize confusion and anxiety, adapt the environment to the person with dementia’s capabilities. Make adjustments as his or her abilities decline.
In some cases, behavioral problems (especially physical aggression and delusions) require treatment with medications, such as antipsychotic, antidepressant, or anti-anxiety drugs. Your hospice team members can determine what type of medication is appropriate.