Late-stage dementia is characterised by profound physical and cognitive decline, mostly as a result of advanced Alzheimer’s disease, Lewy body dementia, or other conditions that affect the brain. Patients with final-stage dementia lose the ability to perform basic tasks and communicate effectively. They may also suffer from loss of memory and mobility, necessitating reliance on palliative care.
Providing palliative care during this stage presents unique challenges. This is because the symptoms are hard to assess due to the patient’s inability to communicate effectively, unpredictable, slow progression of the disease and inadequate care strategies.
Despite the challenges, caregivers, health professionals, and hospice organisations should strive to provide practical and compassionate care. Person-centered palliative care and multi-disciplinary coordination promote quality of life and enhance dignity and comfort during the palliative stages of dementia.
Understanding Dementia in the Palliative Stages
Dementia is progressive, and knowing when a patient is in the late stages can help caregivers provide the necessary care. As the disease progresses, frequent infections and conditions like UTIs and various types of incontinence are common issues. Patients in the late stages may also lose the ability to communicate beyond single words. However, they may still respond to emotional tone and gentle interactions.
Other associated complications include:
- Dysphagia (it increases the risk of choking and aspiration pneumonia)
- Breathlessness
- Skin integrity issues like tears, bruises, and ulcers
- Pain in the affected areas of the brain
- Sleep disruption and weight loss
- Frequent episodes of restlessness, agitation, delirium, or hallucinations
In this last phase, patients can no longer manage themselves, and palliative care becomes the only lifeline for survival and comfort. Therefore, caregivers should focus more on maximising comfort, honoring the patient’s innate worth, and preserving dignity. Care and treatment should adopt a compassionate approach centered on supportive presence and planning.
Communication Challenges and Approaches
As dementia progresses, patients may lose the ability to express themselves verbally. They could keep on repeating familiar phrases that may not have meaning in context and often lose track of their thoughts, hindering emotional engagement and clear communication.
Healthcare professionals and caregivers should adopt proactive measures to ensure that they maintain efficient communication and connection with patients despite the challenges. This can be achieved through the following approaches:
Embracing the Patient’s Reality
As a caregiver, you should avoid correcting the patient. Instead, use validation therapy, which focuses on acknowledging and affirming the person’s feelings and perceptions. Avoid arguing, even if what the patient says seems confusing or does not make sense to you. This approach helps reduce distress and supports emotional well-being.
Speaking Clearly and Simply
Short and straightforward sentences are easy for patients to understand and make sense of. So avoid complex instructions and always speak slowly and calmly using a compassionate tone. If you don’t hear what the patient has said, repeat their words and let them confirm their statement for clarity.
Using Supportive Body Language
The use of physical contact creates reassurance and confidence in the patient. Gently pat the patient’s arm or hold their hands while talking to them. It also helps to foster connection when you sit at their eye level and use facial expressions that match your tone.
Managing Common Symptoms with Compassion
There are several practical and empathetic ways that caregivers can use to address dementia symptoms. These responses, whether pharmacological or drug-free, ensure the preservation of the patient’s dignity and comfort and foster a peaceful environment.
- Pain: use soothing massage, position adjustments, calming music, or comfortable seating. Pain-alleviating medication like paracetamol can also help, as directed by a professional.
- Agitation and delirium: ensure there is reduced noise and glare, offer a calm environment, avoid argument and restraint, and give reassurance
- Breathlessness: adjust the patient to an upright position and offer a gentle fan or breeze. If necessary, medical professionals can administer low-dose morphine or benzodiazepines.
- Sleep disruption: offer calm evening activities, keep daytime bright, minimise naps, and provide a quiet, reassuring atmosphere during bedtime
- Skin integrity: keep the patient’s skin clean, change sleeping positions frequently, and use soft bedding.
- Constipation: encourage the patient to drink prune juice to stay hydrated and eat fiber-rich foods
Best Practices for Compassionate, Dignified Daily Care
Late-stage dementia may last for several weeks, months, or years. Caregivers, health professionals, and hospice homes should provide round-the-clock person-centered care during this phase through the following best practices:
Establishing Routine With Flexibility
As a carer, you should set regular schedules for meals, simple exercises, waking up, and bedtime to increase cooperation, make daily life less stressful, and reduce confusion. These activities should be planned according to the individual patient’s energy levels and mood changes. To help the patient stay oriented, you can use calendars, picture schedules, or alarm clocks.
Involving the Patient and Simplifying Tasks
Breaking down daily chores into simple and manageable steps makes it easier for the patient to perform repetitive tasks like wearing or changing clothes. For instance, you can arrange clothes in the order they should be worn to help the patient put them on with ease. You should also encourage repetition of familiar tasks with minimum assistance to promote mastery, improve emotional comfort, and reduce agitation.
Honoring Preferences and Preserving Dignity
Offering person-centered care means tailoring routines to an individual’s history, values, and likes as opposed to solely focusing on clinical tasks. To achieve this, you should identify a patient’s preferences for things like grooming, clothing, and touch, and then streamline your care approaches in a way that promotes respectful and predictable interactions.
Creating a Personalised Environment
Create soothing lighting, soft music, and meaningful décor that can help evoke calmness and familiarity. You can also incorporate life-story items such as storybooks or photos to stimulate engagement and affirm identity. For instance, you can share a family photo from a favorite vacation or a military medal and share stories surrounding the item to enhance interaction and ease stress.
Constantly Monitoring Pain or Illness
Persons with late-stage dementia may be unable to communicate pain. Regularly check for signs of pain, such as wincing or moving with difficulty. You should also monitor signs of illness such as vomiting, pale gums, feverish skin, and flushed skin tone. If you notice any signs of pain or illness, consult a physician for assistance.
Conclusion
Palliative care for persons who have late-stage dementia can be challenging due to the patient’s inability to communicate and perform basic tasks. However, meaningful bonds can still be sustained by fostering emotional connection and acknowledging the person’s feelings, even as verbal abilities decline. Addressing pain, sleep problems, breathlessness, and other symptoms and embracing best care practices can go a long way in promoting dignified care that improves quality of life.
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Author
Lesley Barton is the National Clinical and Training Manager at Bunzl & AMHC, with over 40 years of healthcare experience. A Registered Nurse, Midwife, and Continence Nurse Specialist, she transitioned into healthcare sales and management, leading education in continence, wound care, and medical consumables.
She serves as a Board Director at the Continence Foundation of Australia and founded the Clinical Care Connections (CCC) program, playing a key role in developing Atlas McNeil Healthcare’s education and training initiatives to support best practices in clinical care.
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