How Palliative Care Helps Families with Dementia Focus on Quality of Life
November is Alzheimer’s Awareness Month, so we are sharing Ann and Holly’s story about how palliative care has helped improve their family’s quality of life.
Ann is a 92-year-old mother, grandmother, and former nurse, who has been living with dementia for 7 years. She also has COPD and heart problems. Anne has been able to live in her own home with the help of her daughter Holly, care from home aides, and the support of a palliative care team.
Ann’s main family caregiver, Holly, knows firsthand that palliative care improves the quality of life for people living with dementia and their caregivers—by adding an extra layer of support. Originally unfamiliar with palliative care, she now describes the team as a safety net. They coordinate all of Ann’s medical needs, manage her symptoms, and help avoid medical emergencies. Now the family is able to focus on their time together, instead of having to be “specialists” in dementia.
The referral to palliative care was made early in Anne’s diagnosis, when she had trouble paying bills, experienced short-term memory loss, and was growing fearful. There were also concerns about possible falls. Her long-time primary care doctor arranged for a palliative care team to visit her at home.
This is Ann and Holly’s palliative care story.
What is Palliative Care?
Palliative care is specialized medical care for people living with a serious illness. This type of care focuses on providing relief from the symptoms and stress of the illness. The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a specially trained team of doctors, nurses and other specialists who work together with a patient’s other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness, and it can be provided along with curative treatment. Depending on where you live, palliative care is available in several settings including hospitals, outpatient clinics and at home.
“Initially, the nursing staff and a social worker came over, and I was able to ask questions about how I could help my mother make safe decisions. They relieved her fear about her cognitive deficiency and worked really well with the home health aides,” Holly shares about the family’s early experience with the palliative care team.
Palliative Care Helps Families Plan for Advanced Dementia
Palliative care specialists can help the person living with dementia, and their family, understand what to expect as the illness progresses. They discuss and support the patient’s and family’s needs and goals of care. Equally important is that palliative care providers are trained to manage the many symptoms that come up, like mood and sleep disturbances and appetite changes. They also identify ways to keep the patient safe in their home or care facility.
Another key benefit of having a palliative care team is they coordinate with other doctors around the patient’s overall medical needs. This helps avoid trips to the emergency department and hospital stays. And because of this, this decreases the sense of disorientation that can happen for the person with Alzheimer’s or dementia.
“In the past, when Ann became ill, it was automatic that they would call 9-1-1 and go to the emergency room. With our [palliative care team in place], which is 24/7, we can usually provide suggestions over the phone for medical management or treatment and then set up an in-person visit within a short time,” describes Dr. JoAnn Maroto-Soltis, Ann’s palliative care doctor.
How Palliative Care Supports Caregivers
Supporting the needs of the caregiver is an important part of what the palliative care team focuses on. If the caregiver is suffering, it impacts their own well-being as well as the patient’s health. Palliative care providers coordinate with family and other caregivers of those to help reduce their emotional and physical strain. This starts by assessing the caregiver’s health, well-being, needs and capacity to be a caregiver. It includes making referrals to medical care, educational and community resources.
As Holly says, “The palliative care staff has helped me stay oriented towards my mom’s experiences as a unique person. It’s more about my family and my mom’s journey, instead of about the symptoms that she exhibits. Palliative care has helped me to be more focused on my mom and less looking for symptoms of a disease that’s taking her away little by little.”
Click here to learn more about how palliative care can help you or someone you love who is living with dementia. Or, to find out how you or a loved one can benefit from palliative care, regardless of the illness, visit GetPalliativeCare.org/rightforyou.
GetPalliativeCare.Org is an online resource for patients and families that focuses solely on providing information on palliative care from the point of diagnosis. At GetPalliativeCare.org you can take a short quiz to see whether you could benefit from palliative care, and find a nearby provider. The site is provided by the Center to Advance Palliative Care.