Caring for a loved one with dementia is an emotionally demanding journey that requires immense patience, compassion, and understanding. As the condition reaches its advanced stages, families and caregivers often seek guidance on what to expect and how to provide the best possible support.
Dementia is not a single condition but rather an umbrella term that includes various types, such as Alzheimer’s disease, vascular dementia, frontotemporal dementia, Lewy body dementia, and mixed dementia. While each type follows its own progression, they all share common changes in the advanced stages.
In the later stages of dementia, individuals experience significant cognitive decline and require extensive support with daily activities. This phase is marked by severe memory loss, profound communication difficulties, and increasing physical frailty.
It’s important to understand that dementia progresses differently for each person. Some people may remain in the advanced stages for years, while others may experience a more rapid decline. Recognising where your loved one is in their dementia journey can help you provide the right support and prepare for the changes ahead.
Unlike the earlier stages, where symptoms primarily involve memory loss and confusion, advanced dementia brings a deeper level of dependence. At this stage, individuals require full assistance with personal care, mobility, and basic daily functions, underscoring the need for compassionate and attentive caregiving.
Recognising the key signs of advanced dementia enables families and healthcare professionals to prioritise quality of life over medical interventions that may cause discomfort without providing meaningful benefit. This awareness helps guide important decisions, whether continuing to provide care at home or considering palliative care and supportive services, ensuring the person with dementia receives compassionate, comfort-focused care tailored to their needs.
Healthcare professionals, including dementia specialists and care providers, play a vital role in supporting families through this difficult transition. They can help interpret changes, manage symptoms, and offer emotional guidance, making the journey more manageable for both the individual and their loved ones.
10 Key Changes to Recognise in Advanced Dementia
1. Significant Changes in Breathing Patterns
In the later stages of dementia, individuals may develop noticeable alterations in their breathing. A common pattern is Cheyne-Stokes breathing, characterised by periods of rapid, deep breaths followed by shallow or paused breathing.
Irregular breathing may include:
- Shallow, effortless breaths
- Episodes of rapid breathing alternating with pauses
- Noisy or gurgling sounds due to respiratory congestion
- Jaw breathing, where the mouth opens and closes with each breath
These changes occur as the body slows down and the respiratory system becomes less efficient. While they may seem distressing to observe, they do not typically cause discomfort to the individual.
2. Reduced Mobility and Increased Time in Bed
In advanced dementia, mobility significantly declines. The person may become bed-bound, requiring full assistance with all personal care.
Reduced movement increases the risk of complications such as pressure ulcers (bedsores), which develop when prolonged pressure restricts blood flow to certain areas of the skin. Caregivers should regularly reposition the individual to prevent this. Common physical changes include:
- Loss of ability to walk or transfer without full support
- Stiffness in joints and muscles
- Difficulty changing position independently
- Increased time spent resting or sleeping
At this stage, healthcare specialists often recommend comfort measures over rehabilitation, focusing on dignity and ease rather than functional recovery.
3. Reduced Oral Intake and Swallowing Difficulties
A noticeable decline in eating and drinking is a common sign of advanced dementia. Swallowing becomes increasingly difficult, leading to:
- Loss of interest in food and drink
- Difficulty swallowing medication
- Coughing or choking when eating or drinking
- Refusing to open the mouth for food
This is a natural part of the body’s changing needs. Forcing food or fluids can cause discomfort and increase the risk of aspiration pneumonia (when food or liquid enters the lungs). Instead, healthcare teams may focus on comfort-based approaches, such as offering small sips of water or moistening the mouth with ice chips.
4. Changes in Skin Appearance and Temperature
As circulation slows, the skin undergoes noticeable changes, including:
- Mottling, where skin appears blotchy or purple, especially on the knees, feet, and hands
- Pale or yellowish skin tone
- Cold hands and feet while the central body remains warm
These changes result from decreased blood circulation as the heart becomes less efficient. Blood vessels constrict in the extremities as the body prioritises blood flow to vital organs, leading to noticeable temperature differences between the limbs and torso.
The mottled appearance of skin, a sign of circulatory changes, is caused by the slowing of blood circulation and is often one of the most visible indicators of advanced progression in dementia.
5. Withdrawal and Reduced Consciousness
As dementia progresses, individuals often withdraw from their surroundings. Signs of this include:
- Increased sleeping
- Unresponsiveness, even when awake
- Less engagement with people and activities
- Minimal reaction to social interaction
While the person may seem disengaged, they can still find comfort in familiar voices, gentle touch, and presence. Even if they do not respond, continuing to speak to them, play soft music, or hold their hand can be reassuring.
6. Loss of Bladder and Bowel control
Incontinence becomes more frequent in advanced dementia, with the person losing awareness of their need to urinate or defecate.
Complications such as urinary tract infections (UTIs) are common due to reduced fluid intake and immobility. Signs of infection may not be obvious but can present as:
- Increased confusion
- Restlessness or agitation
Caregivers should maintain regular checks and changes to ensure comfort and prevent skin irritation.
7. Non-Verbal Signs of Pain or Discomfort
As verbal communication decline, individuals with dementia may communicate dAs verbal communication declines, pain and discomfort may be expressed through non-verbal cues, such as:
- Facial expressions (grimacing, frowning)
- Vocal sounds (moaning, groaning)
- Body language (stiffening, restlessness)
Pain assessment in dementia relies on observation. Healthcare professionals can help manage discomfort through appropriate pain relief and palliative care support.
8. Significant Changes in Vital Signs
As dementia advances, vital signs may fluctuate, including:
- Lowered blood pressure
- Irregular heart rate
- Decreased body temperature
- Slower or irregular breathing
These changes reflect the body’s progressive decline as major organ systems begin to fail. Heart failure may develop or worsen, and conditions like pneumonia become more common as the immune system weakens. Understanding these changes helps families prepare for what lies ahead.
9. Decreased Response to Stimuli
As cognitive function declines, responses to external stimuli become limited. This may include:
- Reduced eye contact
- Little or no response to voices, even of close family members
- Minimal reaction to touch or sound
This doesn’t necessarily mean the person is unaware of their surroundings. Many medical professionals believe hearing may be one of the last senses to fade.
10. Increased Respiratory Secretions and Congestion
Increased respiratory secretions often develop in the very advanced stages. These changes include:
- Gurgling or rattling sounds while breathing
- Increased congestion that does not clear with positioning
- Inability to cough or clear secretions effectively
- Pooling of saliva or drooling
While these sounds may be unsettling, they do not usually cause discomfort. Medications or repositioning techniques may help ease congestion if needed.
Supporting Your Loved One Through Advanced Dementia
During this sensitive time, families can provide meaningful support in several ways:
- Maintain a calming presence: Your voice and touch can be comforting, even when the person with dementia cannot respond.
- Create a peaceful environment: soft lighting, minimal noise, and comfortable room temperature.
- Continue speaking to your loved one: sharing memories, expressing feelings, or reading favourite texts.
- Use gentle touch: holding hands or stroking their arm can be a form of non-verbal communication.
- Play familiar music softly in the background.
Caregiving at this stage is emotionally and physically demanding. Ensure you seek support from professionals, family, or support groups to look after your own well-being.
Support when you need it
Living with dementia can be challenging. Our caring team in Berkshire and Buckinghamshire is here to listen and guide you through available support options. Let’s talk about how we can help you or your loved one.