Palliative care empowers individuals living with dementia to live a meaningful life in accordance with their values, while also supporting their caregivers. A team of physicians, nurses, social workers, and chaplains provide a holistic approach to assessing and managing physical, psychological, social, and spiritual stressors associated with dementia. Importantly, Palliative Care is provided together with life-prolonging and curative treatments and is available at any age, stage, or prognosis of illness. You can have both palliative care and dementia care; you do not need to choose.
Typically, your palliative care clinician collaborates with your primary care doctor and/or your specialty doctor such as your geriatrician or neurologist. The benefits of incorporating Palliative Care into your dementia care are overwhelming -it improves thequality of lifeof the individual living with dementia and their caregivers, andmost peoplewho receive palliative care would recommend it to others!
The Palliative Care Approach to Dementia
Dementia is an umbrella term including Alzheimer’s, Vascular, and Lewy Body Dementia amongst others. A palliative care approach to caring for an individual with dementia and their caregivers includes these 5 key components.
1. Acknowledging
This approach acknowledges the losses inherent to dementia, such as the loss of memory, personality and person hood. It normalizes and supports individuals and caregivers through the grief associated with current and future losses.
2. Asking How
“How can you continue to live life in a way that feels meaningful to you?”, “How can you continue to create new memories for you and your loved ones?”, “How can we best support you?”.
In asking these questions, a palliative care clinician will help to problem solve around the impact that dementia has on your daily life, and will find a way to help you continue to live, meaningfully.
3. Starting Conversations
Early conversations about an individual’s values, goals, and wishes, ideally when the individual with dementia can participate in these conversations is critical. These values and goals should inform conversations about advance care planning and future health care choices, within the context of dementia. This could be the perfect time to identify a health care proxy and to document your wishes.
It can also be helpful to learn about how a particular dementia progresses so that you can proactively plan for these changes. These conversations can also involve thinking through end-of-life care and wishes.A palliative care clinician can facilitate these tough, emotional conversations. Importantly, most individuals living with dementia and their caregivers don’t regret having these conversations, but caregivers do regret not having these conversations early enough.
4. Managing Symptoms & Complications
Many people think of dementia as predominantly a memory problem and they are surprised by the impact of dementia on daily functioning and general health.
For example, as dementia progresses and memory worsens, your loved one may ask the same question over and over again. If your loved one loses the ability to communicate verbally, they may become more agitated or restless. They may also repeat behaviors, like constantly opening the fridge, or repeatedly groaning. Your palliative care clinician will work with you to identify triggers or an underlying cause if there is one, and also develop a plan for coping with the agitation, restlessness, and repetitive behaviors.
In the late stages of dementia, your loved one may have frequent urinary infections, pneumonia, and difficulty swallowing. They may bounce back and forth between the hospital and rehab. Most people also lose the ability to walk independently, to have an appetite, and to toilet independently. Your palliative care clinician can improve your understanding of these known complications and can help patients and families prepare for these changes. They can help you think through the kind of medical care you would want and the kind you would not want, in the context of your values.You can draw on those early conversations with your loved one to inform future medical decisions.
5. Providing Emotional and Spiritual Support
Living with dementia can be overwhelming, frightening, and isolating. Caring for someone with dementia can be both rewarding and exhausting. It is critical for both the caregiver and care-recipient to have a support system that they can lean on. This can be a mix of hired help, friends, family,serious illness coaches, support groups, and therapy. A palliative care clinician can help you brainstorm and develop this support network and help you tap into local community resources.
Palliative Care is Not Hospice Care
Palliative care supports individuals and their caregivers throughout the illness, from the time of diagnosis onwards.Hospice care on the other hand, is a type of holistic medical care reserved for those at the end of life. With hospice care, the focus switches from life-prolonging or curative treatment to comfort care. The interdisciplinary team provides medical care to ensure your loved one is as comfortable as possible, while supporting caregivers during the dying process and with bereavement support after death. Hospice care can be provided in an individual’s home,assisted living, long-term care, hospice facility, and in hospitals. Hospice care will neither hasten nor prolong the dying process, instead it will optimize the quality of life for the time remaining.
Accessing Palliative Care
You can ask your primary care or specialty doctor for a referral to palliative care. Check this database to find a local palliative care provider near you. Often, due to limitations within our healthcare system, a palliative care clinician may not be locally available for individuals living with dementia. In that case,serious illness coaching provided by palliative care clinicians or telepalliative care consultations could be a great option.
Bottom Line
Palliative Care empowers individuals living with dementia and their caregivers with the tools and resources to live a meaningful life. So if you want to live better with dementia, get Palliative Care.
Ashwini Bapat, M.D.is a palliative care doctor, coach, and co-Founder of EpioneMD. EpioneMD provides virtual serious illness coaching to individuals living with illness and their caregivers and telepalliative care consultations to healthcare organizations.
She completed her Internal Medicine residency and Hospice & Palliative Medicine fellowship at Yale-New Haven Hospital and then worked at Massachusetts General Hospital and Harvard Medical School. She is inspired and awed by human resilience and the mysteries intrinsic to life and death.
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