A Quality Life: Palliative Care Helps Families Living with Dementia Focus on Quality of Life
Alzheimer’s disease and dementia are mostly known for memory loss that worsens over time, but it comes with a range of complex needs – for the person diagnosed and the family. And the health needs and safety concerns for all involved typically increase as the disease progresses.
Ann, a 92-year-old mother, grandmother, and former nurse, has been living with dementia for about 7 years. She also has COPD and heart problems. Ann has been able to stay in her own home with the help of her daughter Holly, care from home aides, and a palliative care team.
Holly and her family know firsthand that the palliative care team improves the quality of life for people with dementia and their caregivers by adding a layer of support.
This is Ann and Holly’s palliative care story.
As Ann’s main family caregiver, Holly had not been familiar with palliative care. Today she describes the palliative care team as a safety net. The team manages Ann’s symptoms, coordinates all of her medical needs, and helps them avoid medical emergencies. Equally important is that the family can focus on their relationship and time together, instead of being “specialists” in dementia.
The referral to palliative care was made early when Ann began struggling to pay bills, had short-term memory loss, and generally was weaker and growing fearful. There were also concerns about possible falls. Her long-standing primary care doctor arranged for a palliative care team to visit her at her home.
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, 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 my home health aides. She also needed care and bathing and meal prep,” explains Holly about the family’s early experience with the palliative care team.
Palliative Care Helps Families Anticipate and Plan for Advanced Dementia
Palliative care specialists can help the person 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 occur, like mood and sleep disturbances, appetite changes, and skin breakdown related to limited mobility. They also identify measures 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 families avoid emergency departments and hospital stays. In turn, this decreases the sense of disorientation that can happen for the person with Alzheimer’s or dementia when leaving their home.
“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 service 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. For example, when Ann developed an exacerbation of her lung disease, we provided medication management at home. This achieved what a visit to the hospital would have done,” describes Dr. JoAnn Maroto-Soltis, Ann’s palliative care doctor and the lead clinical physician for the home-based palliative care program for Nuvance Health in Connecticut.
Palliative Care Supports Caregivers
Supporting caregiver needs is also a critical 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 caregivers of those with dementia to reduce their own emotional and physical strain as much as possible. 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.
“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,” says Holly.
To learn more about palliative care and how it can help you or someone you love who is living with dementia or other serious illnesses, visit GetPalliativeCare.org. You can also check out the palliative care Provider Directory, which lets you search for a palliative care provider in your area and by setting.