As Dementia progresses into its later stages, caregiving becomes even more complex and emotionally challenging. Ensuring comfort, dignity, and proper care planning is essential for both the person with Dementia and their loved ones.
The National Institute of Mental Health and Neurosciences (NIMHANS) has created short films featuring real-life stories of caregivers and experts. These highlight the early signs, diagnosis, and Dementia care strategies. Watching these videos can provide valuable insights into managing dementia with compassion and expertise.
From palliative care options to legal and ethical considerations, here’s how caregivers can navigate this sensitive time with compassion and preparedness.
Understanding the Later Stages of Dementia
In the advanced stages, Dementia significantly impacts a person’s ability to communicate, move, and perform basic functions. Memory loss is profound, and they may no longer recognise loved ones. Physical health also declines, making them more vulnerable to infections and other complications.
Challenges in the Later Stages of Dementia:
- Loss of Mobility: Difficulty walking or being bedridden.
- Communication Barriers: Limited speech or nonverbal expressions.
- Difficulty Swallowing: Increased risk of choking and aspiration pneumonia.
- Increased Infections: Higher susceptibility to urinary tract infections and pneumonia.
- Emotional Changes: Anxiety, restlessness, or withdrawal.
Despite these challenges, caregivers can provide comfort and support through compassionate care and thoughtful planning.
Palliative Care: Providing Comfort and Dignity
Palliative care focuses on improving quality of life by managing symptoms and ensuring emotional well-being. It is not just for end-of-life care but can be introduced alongside other treatments to enhance comfort.
Palliative Care Approaches:
- Pain and Symptom Management: Work with doctors to address pain, breathing difficulties, and infections effectively.
- Emotional and Psychological Support: Providing reassurance, playing calming music, and engaging in gentle touch can be soothing.
- Comfort-Focused Care: Create a peaceful environment with soft lighting, familiar objects, and minimal noise.
- Respecting Preferences: Honour the person’s wishes regarding treatments and daily routines.
- Support for Carers: Palliative care teams also assist families in coping with emotional and practical challenges.
Watch this video to understand palliative care in Dementia:
Legal and Ethical Considerations
As Dementia progresses, the ability to make decisions diminishes. Planning ahead ensures that the person’s wishes are respected and prevents uncertainty for caregivers.
Important Legal and Ethical Aspects:
- Advance Care Planning: Discuss preferences for medical interventions, end-of-life care, and living arrangements early on.
- Lasting Power of Attorney (LPA): Assign a trusted person to make healthcare and financial decisions when the individual is no longer able to do so.
- Do Not Resuscitate (DNR) Orders: Clarify whether life-extending treatments, such as CPR, should be administered in critical situations.
- Ethical Decisions in Medical Care: Decisions about tube feeding, life support, and hospitalisation should be based on the person’s previously expressed wishes.
- Funeral and Estate Planning: Having these discussions in advance can ease stress for loved ones and ensure the individual’s wishes are honoured.
Learn more about these important considerations:
Supporting Families and Caregivers
Caring for a loved one in the final stages of Dementia is emotionally demanding. Support networks can help caregivers navigate grief, stress, and difficult decisions.
How Caregivers Can Find Support:
- Hospice and End-of-Life Care Services: These provide medical, emotional, and spiritual support for both the individual and their family.
- Counselling and Grief Support Groups: Speaking with professionals or others in similar situations can provide comfort and guidance.
- Respite Care: Taking breaks through respite services can help prevent caregiver burnout.
- Seeking Community Help: Religious groups, local organisations, and online forums can offer practical and emotional assistance.
Final Thoughts
The later stages of Dementia require compassionate, well-planned care to maintain dignity and comfort. While this time is challenging, planning ahead and accessing the right support can make a meaningful difference for both the person with Dementia and their loved ones.
Caregivers, remember that you are not alone—reach out for help, lean on support systems, and take moments to care for yourself, too.
Frequently Asked Questions
Yes, in India, you can contact the Dementia India Alliance National Dementia Support Line at +91 8585 990 990 (available Monday-Saturday, 8:00 AM to 6:00 PM). Y
Dementia is an umbrella term for cognitive decline, while Alzheimer’s is its most common type.
Mostly after 65, but early-onset dementia can begin anytime between 40s or 50s.
Over 8.8 million people in India live with dementia.
Most types aren’t, but some caused by vitamin deficiencies or infections can be treated.
No, occasional forgetfulness is normal. Persistent memory issues should be checked.
Yes! Regular exercise, a healthy diet, mental stimulation, and social engagement help.
Yes, like difficulty walking, poor coordination, and weight loss in later stages.
