How to care for a loved one with dementia in palliative care

Caring for a loved one with dementia in palliative care is a journey that demands patience, empathy, and understanding. Dementia, a progressive condition that affects memory, thinking, and behaviour, can be particularly challenging in its later stages. Palliative care focuses on providing relief from the symptoms and stress of the illness, aiming to improve the quality of life for both the patient and the family.

This guide offers practical advice on how to care for a loved one with dementia during this sensitive time.

Understanding palliative care for dementia 

Palliative care is not just for those at the end of life; it can be integrated at any stage of a serious illness like dementia. The goal is to provide comfort and maintain dignity by managing symptoms, addressing emotional and spiritual needs, and offering support to caregivers. In the context of dementia, palliative care focuses on:

• Pain and symptom management: Addressing physical symptoms like pain, difficulty swallowing, and agitation.
• Emotional and psychological support: Providing comfort and reducing anxiety, depression, and fear.
• Spiritual care: Helping the patient and family find peace and meaning during this stage of life.
• Caregiver support: Offering resources and respite to those caring for the patient.

How to care for someone with advanced dementia 

Caring for someone with advanced dementia requires specialised attention and strategies that address the specific challenges of this stage. As the disease progresses, your loved one may lose the ability to communicate, recognise loved ones, or perform daily activities. Here’s how you can provide effective care:

• Personal hygiene and dressing: Assistance with bathing, dressing, and grooming becomes essential. Use gentle and patient approaches to ensure your loved one feels safe and comfortable.
• Feeding and nutrition: As eating and swallowing become more difficult, provide soft, easy-to-swallow foods and ensure they receive adequate nutrition. In some cases, you may need to consult with a healthcare provider about alternative feeding options.
• Mobility and safety: People with advanced dementia may be prone to falls and other accidents. To ensure their environment is safe, remove hazards, provide mobility aids, and supervise their movements.
• Comfort and familiarity: Create a comforting environment filled with familiar items that may evoke positive memories. Regularly engage in activities that your loved one once enjoyed, even if their participation is limited.

What level of care does a person with advanced dementia need?

As dementia advances, the level of care required increases significantly. Understanding the appropriate level of care is crucial for ensuring your loved one’s needs are met:

• 24-hour supervision: Due to the risk of wandering, falls, and difficulty with basic tasks, individuals with advanced dementia often require round-the-clock care.
• Medical and nursing care: Advanced dementia may come with complex medical needs, including pain management, medication administration, and monitoring for infections or other health issues. Professional nursing care or hospice services may be necessary to provide this level of care.
• Assistance with daily activities: Everyday tasks such as eating, bathing, and toileting require assistance. Trained caregivers or family members need to be involved in every aspect of daily care.
• Behavioural support: People with advanced dementia may experience severe agitation, aggression, psychiatric symptoms, and anxiety. Behavioural support involves calming techniques, a structured environment, and sometimes medication to manage these symptoms.
• End-of-life planning: For many with advanced dementia, palliative care includes making decisions about end-of-life care, including whether to pursue aggressive treatments or focus solely on comfort measures.

How can palliative care help a loved one with advanced dementia? 

Palliative care can significantly improve the quality of life for a loved one with severe dementia by addressing the complex symptoms and emotional challenges associated with the condition. It provides comprehensive support as the person’s dementia progresses, focusing on relieving physical discomforts, such as pain and difficulty swallowing, and managing behavioural symptoms like agitation and anxiety. Palliative care also offers emotional and psychological support, helping to reduce feelings of confusion and fear that often accompany advanced dementia. 

Additionally, it supports caregivers by offering guidance on care strategies and providing accommodation services, ensuring that both the patient and their family receive the compassionate care they need during this challenging time.

Communicating with your loved one

Whether your loved one has just been diagnosed with dementia or they’re struggling with an advanced form of the illness, communicating with your loved one can be difficult. But, it remains crucial for maintaining a connection - for you, and other family members. Here are some tips:

• Use simple language: Speak in short, clear sentences. Avoid complex questions or instructions.
• Non-verbal communication: Pay attention to body language, facial expressions, and tone of voice. Sometimes, a gentle touch or a warm smile can convey more than words.
• Be patient and reassuring: Dementia patients may become confused or agitated. Stay calm, and offer reassurance through a soothing tone and positive affirmations.
• Create a quiet environment: Minimise distractions to help your loved one focus on the conversation. Background noise can be confusing and overwhelming. 

Supporting yourself as a carer 

Caring for a loved one with dementia can be physically and emotionally exhausting. It’s essential to take care of yourself and think about your own health, too:

• Seek support: Don’t hesitate to reach out to dementia care support groups, friends, or professionals. Sharing your experiences can provide comfort and practical advice.
• Take breaks: Respite care services can give you time to rest and recharge. It’s okay to ask for help.
• Practice self-care: Regular exercise, healthy eating, and mindfulness practices can help you maintain your own well-being.

Making difficult decisions 

Palliative care often involves making tough decisions about treatment options and end-of-life care. Here’s how to navigate these choices by using support services:

• Advance directives: Ensure that your loved one’s wishes regarding medical treatment are documented in a living will.
• Consult with healthcare providers: Regularly communicate with doctors, nurses, and palliative care specialists to understand the best options for your loved one’s care.
• Consider hospice care: When appropriate, hospice care can provide comprehensive and practical support for both the patient and the family during the final stages of dementia.
• Finding a residential aged care: A residential aged care facility may be the best option for your loved one. As they age, having health professionals who understand the best methods of care could make them feel more comfortable with their situation. At MACG, we offer specialised palliative care within our homes, helping all residents throughout their journey. 

Find supportive palliative care for people with dementia at MACG

At MACG, our health professionals are dedicated to providing specialised palliative care for individuals with Alzheimer’s disease and other forms of dementia. We understand that the journey through this condition is challenging for both the person and their family member. Our care is tailored to enhance the quality of the person's life, addressing their unique physical, emotional, and spiritual needs. 

By working closely with families, we develop a personalised care plan that respects the individual's wishes and life expectancy, ensuring dignity and comfort throughout the person's care. Whether managing symptoms or offering emotional support, MACG is here to guide you and your loved one through every step of this journey.