Home Care for advanced Dementia: how Palliative Care can help
– Ms. Swapna Kishore, Bengaluru
In India, most dementia care happens at home, including care during advanced stages. While most people think of dementia as ‘memory loss’, dementia is a progressive disorder and in the advanced stage, decline is severe mentally and physically. Usually by then, the person is frail, old, has multiple medical conditions, has swallowing problems, is incontinent, lacks mobility and is completely dependent. Cognitive impairment is severe and affects the ability to talk or explain problems.
Care for advanced dementia is replete with challenges in addition to those seen in care for other serious conditions. Experiences below, shared by families, help us consider how palliative care may help. Two detailed interviews of advanced dementia care can also be seen[1, 2].
Scenario 1: An agitated caregiver called me to share that her doctor wanted her to bring her Amma over the next day for a simple procedure called PEG because she had told him that her Amma was not eating properly. The doctor asked nothing, gave no explanations. She felt rushed and shaky, and googled – found PEG was Percutaneous Endoscopic Gastrostomy, read a bit more and got alarmed. She wanted reliable input on pros and cons so that her family could discuss and decide.
Scenario 2: (interview on multiple aspects here): Vijaya was advised to get a PEG placed for her father, who had dementia and many other conditions. The doctor said it was a simple procedure, nothing to worry about, and gave a brief explanation. Vijaya and her sister decided to research and evaluate. They considered aspects like whether their father would get confused and pull at it, PEG maintenance, infection risk, hospital trips, impact on quality of life, etc. They discussed how difficult it may be to decide to remove the tube later. They finally decided against the PEG.
Scenario 3: A father (advanced dementia) was admitted for an infection but not discharged after the infection was resolved. He was disoriented and uncomfortable in the hospital. The doctors wanted more tests, and refused to discuss it with the family, but just said that he would die if he was taken home. The father anyway died in the hospital a few weeks later, without family and away from home. The daughter still feels traumatized.
Scenario 4: A son in a situation similar to scenario 3 managed to get his 90+ mother home from the hospital. It was labelled ‘leaving against medical advice’ (LAMA). The doctor was so angry he refused to support the frail lady at home.
Scenario 5: A hospital discharged a lady who was not opening her eyes, saying that they could do nothing more. But once home, the lady perked up, opened her eyes and recognized her family. Though she continued to deteriorate and died soon after, she spent her final days in peace and at home.
Scenario 6: (interview on multiple aspects here): Neena’s (name changed) mother-in-law had multiple medical conditions (heart problems, osteoporosis, Parkinson’s Disease, dementia). She was hospitalized for multiple fractures and then suddenly one day Neena was told to immediately take her home. By then Amma had a Ryle’s tube, catheter, traction, and was bedridden. Neena rushed to set up home for appropriate care and to learn the required skills to care. In her interview discussing these challenges, Neena also describes how difficult it was to see Amma in so much pain. She dreads emergencies- they don’t want to prolong Amma’s misery, but wouldn’t they end up taking her to a hospital anyway?
Some areas that need to be addressed
As the above scenarios show, a lack of discussion between doctors and the family is a common problem.Often, the doctors decide what is suitable and expect the family to accept it. This contrasts with the recommendation that caregivers should be actively involved in all the decision making steps.
The use of feeding tubes, for example, should be an informed decision. As this discussion on artificial nutrition says: “It should be a carefully considered decision whether to tube feed someone who cannot consent or understand what is happening as it is a procedure that has discomfort and several complications.”
(Note that while there are many empathetic doctors, families may not reach them.)
Choosing aggressive methods without weighing the possible long-term benefit against the discomfort is another problem. As the IAPC’s Delhi declaration states, “Too frequently, older people with terminal illness undergo unnecessary investigations, treatments, hospitalizations, and admissions to intensive care.”
Most importantly, home caregivers don’t have the required information and support to help them ensure the quality of life of loved ones while navigating the medical care domain. They have to educate themselves and are most often alone as they try to do what is best.
Palliative care can ease home care
Integrating palliative care in advanced dementia care requires an understanding of the additional challenges in such situations. Caregivers and professionals must appreciate that invasive treatments and medical settings can frighten or agitate someone with severe cognitive decline, know how to assess the person’s preferences and feelings, recognize pain and its impact on behavior, etc. The family’s role is critical. The detailed discussion in this paper is pertinent for this.
Some potential action points emerge:
- Sensitize medical professionals about palliative approach for advanced dementia. Create transparency. Define protocols that factor how persons in advanced dementia may be extremely disoriented and uncomfortable in hospitals and need family around them. Discharge should consider trade-offs between the possible benefits of hospital treatment versus the travails of hospital stay and quality of life impact. The role of family must be recognized. Family doctors/ geriatricians may provide a palliative care bridge between the specialists and the family.
- Integrate relevant palliative care concepts in all healthcare services. For example, while training home healthcare attendants or creating care homes and hospices for dementia persons.
- Ensure all palliative care professionals understand advanced dementia and how it affects treatment decisions and checking for consent. Include enough case studies in educational material.
- Educate home caregivers on palliative care. Make caregivers aware of palliative care. Integrate its core concepts in dementia care material and training.
- Provide home-based palliative care services. Kerala’s community-based palliative care program (as discussed in this study) may be useful to design a model for advanced dementia.
- Create a directory of palliative care professionals.
Broadly, palliative care concepts may provide families with a framework for decisions and trade-offs, thereby making them confident about decisions and discussions with doctors. Home palliative care services can make home care more tuned to quality of life. When in hospitals, empowered caregivers can request for palliative care. Medical professionals, including palliative care professionals, once sensitized for advanced dementia, will be able to support families in more meaningful ways. Of course, palliative care can span much more than care in advanced stages, but this would be a beginning.
- ‘Late-stage care, heartbreaks and tender moments, hospitals, dilemmas, decisions: a daughter narrates’, https://dementiacarenotes.in/vijaya-interview/ [Last accessed on Sep 12, 2022]
- ‘When I see Ma struggle, I get very disturbed: a daughter-in-law describes the caregiving for a bedridden mother-in-law’, https://dementiacarenotes.in/neena-interview-bedridden-ma/ [Last accessed on Sep 12, 2022]
- Kumar CS, Kuriakose JR. End-of-life care issues in advanced dementia. Ment Health Fam Med. 2013 Sep;10(3):129-32. PMID: 24427179; PMCID: PMC3822659. Available at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3822659/ [Last accessed on Sep 12, 2022]
- Indian Association of Palliative Care. Delhi Declaration for Palliative Care and End of Life Care for Older People. Available from https://www.palliativecare.in/delhi-declaration-for-palliative-care-and-end-of-life-care-for-older-people/. [Last accessed on Sep 12, 2022]
- Philip, R.R., Philip, S., Tripathy, J.P. et al. Twenty years of home-based palliative care in Malappuram, Kerala, India: a descriptive study of patients and their care-givers. BMC Palliat Care 17, 26 (2018). https://doi.org/10.1186/s12904-018-0278-4 [Last accessed on Sep 12, 2022]
About the Author: Ms Swapna Kishore is a resource person for dementia and creates online resources in English and Hindi. Her material is specifically created to help Indian caregivers providing dementia care at home. Additionally, she has created material to help volunteers understand home care challenges. Her main websites are dementiacarenotes.in and dementiahindi.com, and she also has a blog and has dementia care related presentations on SlideShare.