I have been working in hospice care for more than 20 years, and when I hear the word pain, I can’t help but think no one should have to hurt at the end of life. This is especially true when I think of people living with dementia. Dementia is disease type that causes impairments in language, memory, personality, behavior and judgment. It is a chronic disease that causes continuous decline in the ability to see, hear, move, taste, remember, reason and understand. Because of their disease, most dementia patients can no longer report pain because they do not recognize it. Who will advocate for their comfort?
Pain in individuals with dementia is often under assessed and under treated. Studies indicate that although dementia patients experience severe or chronic pain, they regularly receive fewer pain medications than healthy senior adults. The results of one study also showed Alzheimer’s disease, which is a category of dementia, did not alter the sensation of pain in individuals with Alzheimer’s; it only altered their ability to report pain.
Because a person with dementia may not be able to tell anyone of the pain he or she experiences, it’s so important to educate the caregiver. Whether the caregiver is a significant other, a family member, a CNA or a nurse, they all need to recognize the verbal and nonverbal signs of pain to ensure comfort for the individual with dementia. One situation in particular I have witnessed throughout my years as a hospice nurse is the misconception that the patient is comfortable as long as he or she is not moved around. A patient should be able to be repositioned without the fear of pain.
Signs or behaviors—nonverbal and verbal—indicating pain can include:
- Anxiety or restlessness
- Constant pacing, moving or unwillingness to sit down
- Moaning, crying, sighing and even heavy breathing
- Frowning, grimacing or a furrowed brow
- Sleeping all day or not being able to sleep
- Very rigid, striking out or resistive
It can be challenging to assess the comfort of someone with dementia. Pain is ever-changing and needs to be continually assessed, especially in the individual who is no longer able to even recognize pain. It is amazing what a little bit of pain medication, an hour before cares, can do for a person’s comfort, and how much easier it will be for that caregiver to provide cares.
I hope this information will help caregivers continue to provide best care possible.
Roxanne Smedsrud is a clinical education specialist at Hospice of the Red River Valley.
About Hospice of the Red River Valley
Hospice of the Red River Valley is an independent, not-for-profit hospice serving all, or portions of, 29 counties in North Dakota and Minnesota. Hospice care is intensive comfort care that alleviates pain and suffering, enhancing the quality of life for patients with life-limiting illnesses and their loved ones by addressing their medical, emotional, spiritual and grief needs. For more information, call toll free 800-237-4629, email firstname.lastname@example.org or visit www.hrrv.org.