Stage 6: Advanced/End-of-Life Care

Ensuring comfort, dignity, and peace in the final stage of dementia

Where You Are Now

Your loved one has reached advanced dementia. They likely cannot communicate verbally, recognize family members, or perform basic self-care. They're increasingly frail, vulnerable to infections, and experiencing physical decline alongside cognitive deterioration. You're preparing for the inevitable while trying to ensure their remaining time is comfortable and dignified.

Stage 6 is the final stage of the dementia journey. It's characterized by profound physical and cognitive impairment, increasing medical needs, and the approach of death. This stage requires difficult medical decisions, focus on comfort rather than cure, and preparation for loss.

Advanced dementia can last months to several years. The pace varies—some people decline rapidly while others remain relatively stable before a sudden change. Understanding what to expect helps you advocate for appropriate care and make peace with what's coming.

Understanding Advanced Dementia

Late-stage dementia is a terminal condition. Recognizing this helps frame appropriate care goals and decisions.

Physical Changes in Stage 6

Mobility: Usually bedbound or chair-bound, unable to walk independently
Communication: Minimal or no verbal communication, may make sounds or use facial expressions
Eating and swallowing: Difficulty chewing and swallowing, at risk of aspiration
Incontinence: Complete loss of bladder and bowel control
Muscle contractures: Limbs may become rigid or contracted
Frequent infections: Pneumonia, urinary tract infections, skin infections
Weight loss: Significant loss of body mass despite adequate food offerings
Pressure sores: Increased vulnerability due to immobility
Sleep disturbances: Irregular sleep-wake patterns

Cognitive Changes

No recognition of family or familiar people
No awareness of surroundings or time
Inability to process information or follow simple instructions
Loss of awareness of basic needs (hunger, thirst, pain)

What They Can Still Experience

Despite profound impairment, people in advanced dementia can still experience:

Comfort and discomfort: Pain, soothing touch, pleasant sounds
Emotional tone: Calm vs. agitated atmosphere
Familiar presence: Even without recognition, familiar voices provide comfort
Sensory experiences: Music, gentle touch, favorite scents

Hearing often remains even when all other senses have deteriorated. Speaking to your loved one, reading aloud, or playing music may provide comfort even if they can't respond.

[SUGGESTED NEW ARTICLE: "What Happens in Late-Stage Dementia: The Physical and Cognitive Reality" – Detailed medical explanation of end-stage changes]

Advance Care Planning

If not already done, advance care planning is essential in Stage 6. These decisions should ideally be made earlier, but if you're now facing them, understanding options helps.

DNACPR (Do Not Attempt Cardiopulmonary Resuscitation)

A DNACPR order means that if the person's heart stops or they stop breathing, CPR will not be attempted.

Key considerations:

In advanced dementia, CPR is almost never successful and causes suffering
Even if heart restarts, underlying terminal condition remains
DNACPR focuses on natural, peaceful death rather than traumatic resuscitation attempt
Does NOT mean "do not treat"—other medical care continues
Decision made based on best interests if person lacks capacity

Most families in Stage 6 choose DNACPR to allow natural death rather than prolonging dying process.

Treatment Escalation Plans

These document what treatments should and shouldn't be used as condition worsens:

Antibiotics for infections: When to treat vs. when to focus on comfort
Hospital admission: Circumstances under which transfer to hospital is appropriate
Artificial nutrition and hydration: PEG feeding tubes, IV fluids
Oxygen therapy: When beneficial vs. when it prolongs dying

Best Interests Decisions

When person lacks capacity to make own decisions, decisions are made in their "best interests" considering:

Previously expressed wishes (when they had capacity)
Current quality of life
Likelihood of benefit from treatment
Burden vs. benefit of intervention
Views of family and those close to the person
Medical professional assessment

If you hold Lasting Power of Attorney for Health and Welfare, you're the primary decision-maker (consulting with medical professionals). Without LPA, medical team makes decisions consulting family.

[SUGGESTED NEW ARTICLE: "End-of-Life Medical Decisions in Dementia: DNACPR, Treatment Escalation, and Best Interests" – Comprehensive guide to difficult decisions]

Palliative and End-of-Life Care

Once dementia reaches advanced stage, care shifts from life-prolonging to comfort-focused (palliative) approach.

Palliative Care Philosophy

Palliative care focuses on:

Comfort: Managing symptoms to maximize quality of remaining life
Dignity: Respectful, person-centered care until death
Quality over quantity: Comfort and peace prioritized over prolonging life
Supporting family: Emotional and practical support for loved ones

Important: Palliative care is NOT "giving up", it's ensuring appropriate care focused on what matters most: comfort and dignity.

Where End-of-Life Care Happens

In Care Home

Many people with dementia die peacefully in their care home with support from:

Care home staff
GP and district nurses
Specialist palliative care teams (if needed)
Family presence and support

Benefits: Familiar environment, known staff, continuity of care

Hospice

Some families choose hospice transfer for final days/weeks.

Benefits: Specialist palliative care expertise, family accommodation, intensive symptom management

Considerations: Disruption of moving, may not be necessary if care home provides good end-of-life care

Hospital

Hospital admission in late-stage dementia is usually inappropriate unless:

Acute treatable condition (e.g., broken bone requiring surgery)
Symptom management unavailable elsewhere
Specific medical intervention needed

Most hospital admissions for dying people with advanced dementia cause distress without benefit. Plan to avoid this where possible.

NHS Continuing Healthcare

People with advanced dementia may qualify for fully-funded NHS Continuing Healthcare due to complex health needs.

Worth pursuing because:

Removes financial burden of care home fees
Can be backdated if previously eligible but not assessed
Ensures access to necessary nursing care

Application process: Request CHC assessment from GP or care home. Assessment focuses on health needs rather than financial status.

[SUGGESTED NEW ARTICLE: "NHS Continuing Healthcare for Advanced Dementia: Application Guide" – Step-by-step process for securing funding]

Managing Symptoms and Ensuring Comfort

Advanced dementia creates symptoms that require active management for comfort.

Pain Management

Challenge: Person cannot verbally report pain.

Signs of pain to watch for:

Facial grimacing or frowning
Vocalizations (moaning, crying out)
Agitation or restlessness
Resistance to care or touch
Withdrawal
Changes in usual behavior patterns

Pain management options:

Regular pain relief (paracetamol, stronger medications as needed)
Pain relief patches for continuous comfort
Morphine or other opioids for severe pain
Regular reassessment and adjustment

Eating and Drinking Challenges

As swallowing becomes difficult, families face heartbreaking questions about nutrition.

Hand-Feeding Approaches

Small amounts, patient pace
Favorite foods and flavors
Thickened liquids to reduce choking risk
Comfort feeding rather than nutritional adequacy

The Question of Feeding Tubes

PEG (percutaneous endoscopic gastrostomy) tubes are feeding tubes inserted through abdomen into stomach.

Evidence shows that for advanced dementia:

PEG tubes do NOT extend life
Do NOT improve quality of life
Do NOT prevent aspiration pneumonia (can actually increase risk)
Can cause distress and require restraints to prevent removal

Most dementia experts recommend against PEG tubes in advanced dementia. Careful hand-feeding focused on comfort is usually more appropriate and dignified.

Natural Decrease in Eating

As death approaches, decreased eating and drinking is natural part of dying process—not starvation or dehydration causing death, but dying causing decreased intake.

Forcing food or fluids at this stage causes discomfort without benefit. Focus shifts to mouth care and sips of favorite drinks for comfort.

Mouth Care

Even if not eating/drinking much, excellent mouth care is essential for comfort:

Frequent mouth cleaning
Moistening dry mouth with wet swabs
Lip balm for dry lips
Small ice chips or sips of water for comfort

Breathing Difficulties

Positioning to ease breathing
Oxygen if beneficial (not if prolonging dying)
Medications to reduce breathlessness anxiety
Fan creating airflow can provide comfort

Skin Care

Immobility creates pressure sore risk:

Regular position changes (turning)
Pressure-relieving mattresses
Skin checks and immediate treatment of any breakdown
Gentle cleansing and moisturizing

[SUGGESTED NEW ARTICLE: "Comfort Care in Advanced Dementia: Managing Symptoms Without Words" – Detailed symptom management guide]

Recognizing the Dying Process

Understanding signs that death is approaching helps families prepare and ensure appropriate care.

Weeks to Days Before Death

Increased sleeping, less alert when awake
Decreased interest in food and drink
Withdrawal from surroundings
Spending more time with eyes closed
Increased physical weakness

Days to Hours Before Death

Changes in breathing: Irregular patterns, long pauses, rapid then slow
Skin changes: Pale, mottled, cool to touch especially extremities
Restlessness: Picking at bedclothes, trying to get out of bed
Congestion: Rattling or gurgling sounds (not uncomfortable for person, though distressing to hear)
Decreased responsiveness: Less reactive to voice or touch
Incontinence changes: Decreased urine output, darker color

The Final Hours

Very irregular breathing with long pauses
Minimal or no response to stimulation
Skin increasingly mottled and cool
Possible brief period of lucidity or seeming improvement (surge before death)

What "Comfortable" Looks Like

Good end-of-life care means the person appears:

Peaceful rather than agitated
Not struggling to breathe (even if breathing sounds unusual)
Pain-free (no grimacing or signs of distress)
Clean and cared for
In the presence of caring people

[SUGGESTED NEW ARTICLE: "The Last Days: What to Expect as Death Approaches in Dementia" – Detailed timeline and signs of dying process]

Being Present at the End

Families often struggle with whether to be present at the moment of death and how to support their loved one.

Vigil Planning

When death appears imminent (days to hours away):

Notify family: Care home should inform you when death is very close
Coordinate family presence: Who wants to be there, taking turns if extended vigil
Balance presence with self-care: Long vigils are exhausting
Permission to leave: Many people die when family briefly steps out—this is okay

What to Do During Final Hours

Be present: Your loved one may be aware of presence even without response
Talk to them: Share memories, say what you need to say, give permission to let go
Physical comfort: Hold their hand, gentle touch, sit close
Music: Play their favorite songs
Read: Religious texts, poetry, favorite passages
Simply being: Quiet presence is enough

Cultural and Religious Observances

Different faiths and cultures have specific end-of-life practices:

Inform care home staff of any specific requirements
Arrange for religious leader or spiritual support if desired
Specific prayers or rituals at time of death
Body care requirements after death

If You're Not There

Many people die when family is not present. This does NOT mean you failed them or they died alone.

Care home staff provide caring presence
Some people seem to choose moment when family is absent (sparing them distress)
Your love and years of care matter more than presence at final breath

[SUGGESTED NEW ARTICLE: "Being Present at Death: A Family Guide to End-of-Life Vigils" – Practical and emotional guidance for final days]

Immediately After Death

Understanding what happens immediately after death helps you navigate this difficult time.

What Happens at the Care Home

Confirmation of death: Nurse or doctor confirms death
Body care: Staff wash and prepare body respectfully
Family time: You can spend time with your loved one if you wish
Removal: Funeral director collects body (timing varies, usually within hours)

Emotional Support

Care home staff often provide immediate support:

Private space for family
Tea, tissues, compassionate presence
Staff may share memories if they knew your loved one well

Practical Immediate Steps

Notify close family: Contact those who need to know immediately
Funeral director: If not already arranged, care home can recommend or you can choose
Personal belongings: Collect or arrange collection
Death certificate: Doctor will issue (may take few days)

What You Might Feel

Common immediate reactions:

Relief: Their suffering has ended, your long vigil is over
Numbness: Shock even when death was expected
Unexpected grief: Even after long illness, finality hurts
Guilt: About feeling relief, about decisions made, about not being present
Emptiness: Sudden absence of caregiving structure

All reactions are normal. There's no "right way" to feel.

[SUGGESTED NEW ARTICLE: "The First Hours After Death: What Happens and What to Do" – Step-by-step practical guide]

Practical Matters After Death

Alongside grief, practical tasks require attention in days and weeks following death.

Registering the Death

Death must be registered within 5 days (8 days in Scotland).

Process:

Doctor issues Medical Certificate of Cause of Death
Register death at local Register Office
Receive death certificate and other documents

You'll need:

Medical certificate
Deceased's birth certificate (if available)
Proof of identity

Funeral Arrangements

Contact chosen funeral director
Decide on burial or cremation
Plan service (religious or secular, location, readings, music)
Write obituary if desired
Notify extended family and friends

Financial Matters

Final care home invoice: Fees owed up to date of death
Funeral costs: Can be paid from estate
Stop ongoing payments: Pensions, benefits, direct debits
Notify relevant organizations: Banks, pension providers, utility companies, DVLA, etc.
Apply for bereavement benefits: If applicable

Estate and Probate

Locate will
Identify executor
Apply for probate (if needed)
Distribute estate according to will

[SUGGESTED NEW ARTICLE: "Practical Checklist: Tasks to Complete in the First Month After Death" – Comprehensive administrative guide]

Grief and Bereavement

Grief after long dementia illness is complex and often misunderstood.

Anticipatory Grief

You've likely been grieving for years—grieving the person they were, the relationship you had, the future you expected. Death brings finality, but grief didn't start then.

Relief and Guilt

Feeling relief when someone dies after prolonged suffering is normal, healthy, and loving—not something to feel guilty about.

Relief that:

Their suffering has ended
The long illness is over
You can reclaim your own life
The burden of caregiving/visiting/worrying is lifted

This relief coexists with genuine grief and love.

Complicated Grief Patterns

Delayed grief: Feeling nothing initially, grief emerging weeks or months later
Unexpected intensity: Surprised by depth of grief when death was expected
Minimal grief: Having grieved during illness, feeling relatively at peace
Ambivalent grief: Mixed feelings about person or relationship complicating mourning

All grief patterns are valid.

Supporting Yourself Through Grief

Allow yourself to grieve: No timeline, no "right way"
Talk about them: Share memories, tell stories
Create memorial: Photo album, charity donation, tree planting
Join bereavement groups: Connect with others who understand
Professional support: Counseling if grief is overwhelming
Self-care: Physical health, sleep, nutrition, gentle exercise
Patience: Healing takes time

When to Seek Professional Help

Grief interfering with daily functioning for extended period
Thoughts of self-harm
Inability to accept the death after many months
Severe depression or anxiety
Relationship breakdowns
Using alcohol or drugs to cope

[SUGGESTED NEW ARTICLE: "Grief After Dementia: Understanding Complex Bereavement" – Psychological guide to mourning after long illness]

Moving Forward

Months and years after death, life gradually returns to new normal.

Rebuilding Life After Loss

Reconnecting with interests and hobbies
Rebuilding social connections
Rediscovering identity beyond caregiver role
Making new plans and goals
Honoring memory while moving forward

Honoring Their Memory

Annual memorial or celebration of life
Supporting dementia charities or research
Volunteering to help other families
Sharing your story to help others
Living well as tribute to their life

Supporting Others on the Journey

Many families who've completed the dementia journey find meaning in supporting others:

Dementia befriending or support groups
Sharing knowledge with newly-diagnosed families
Care home volunteering
Advocacy for better dementia care
Fundraising for dementia research

Stage 6 Resources

From DementiaCarechoices.com

Six-Stage Journey Overview – Reflect on the complete journey
Free Benchmark Assessment

End-of-Life Support

Marie Curie: 0800 090 2309 – End-of-life care and support
Hospice UK: Find local hospice support – hospiceuk.org
Admiral Nurses: 0800 888 6678 – Support through end-of-life and bereavement

Bereavement Support

Cruse Bereavement Support: 0808 808 1677
Sue Ryder Bereavement Support: Online and telephone support
Samaritans: 116 123 – 24/7 support if you're struggling
Alzheimer's Society Bereavement Support: 0333 150 3456

Practical Advice

GOV.UK Tell Us Once service: Notify government services of death in one go
Citizens Advice: Practical guidance on estates, probate, benefits

[SUGGESTED RESOURCE: Downloadable "End-of-Life and Bereavement Support Pack" – Advanced care planning templates, symptom management guide, after-death checklist, bereavement resources]

Navigating end-of-life care? You don't have to do this alone. Our Stage 6 support community connects families through this most difficult phase. Professional bereavement support is also available; don't hesitate to reach out.

In memory: Every family's dementia journey is unique. Thank you for caring for your loved one with dignity and love through all six stages.

Last updated: February 2026