Dementia Care

End Of Life Care In Dementia
  • End of life care in dementia
Dementia at
end-stage
What is
‘end of life care’?
Who are involved with
end of life care?
Planning for
end of life
Caring for a person with
dementia at the end of life
Support for
carers and family

Dementia at end-stage

Dementia is a life-limiting condition that can be difficult to determine when and how quickly a person’s dementia has progressed to its end-stage. However, it is important to know when they are nearing the end-stage to be able to provide them with the right care.

Symptoms of a person with end-stage dementia:

  • Limited speech with difficulty in expressing themselves
  • Experiences difficulty in walking
  • Increase in the risk of falls
  • Unable to perform everyday activities independently: eg. eating, drinking, grooming
  • Incontinent
  • Recurrent infections
  • Sleeps more often
  • Becoming bed bound

What is ‘end of life’ care?

End of life care supports people who are in their last months or years of their life.
Care at this stage aims to support the person with life-limiting condition to live well and in comfort.
The care also aims to provide support to families, carers and others that are important to the person with dementia.
End of life care supports:
  • Physical needs (eg. pain relief and other symptom management)
  • Mental well-being
  • Relationships
  • Spiritual beliefs and needs
The person at end of life care should be treated with compassion and respect. They should also be at a place that they are most comfortable and familiar with, together with those close to them.

Who are involved with end of life care?

Other than caregivers, the person with dementia care at the end of life can involve different healthcare professionals:
  • Doctors
  • Community nurses
  • Social workers
  • Care home staffs
  • Specialists
Ask your doctor and local hospice (if you have one) about what is available in your area.

Planning for end of life

Discussing end-of-life wishes can be difficult and emotional. However, these conversations and planning are important to ensure that persons with dementia’s needs are met at the end of their life. It is important to try and have these conversations as early as possible while the person with dementia are still capable of making decisions for themselves.

Consider planning for:

  • How would the person with dementia prefer to be cared for in the final months of their life?
  • Where would the person with dementia like to receive their care?
  • What are their religious, spiritual or cultural beliefs about end of life?
  • Legal documents, called advance directives that enables the person with dementia  to document the preferences regarding treatment and care at the end of life
  • Conversation with your doctor to ensure your doctor understands the preferences in advance
When this is not possible, caregivers should focus on getting to know the person with dementia values, wishes and beliefs to help when the decisions are need to be made on their behalf.

Caring for a person with dementia at the end of life

There are many ways which you can support someone with dementia at the end of life.

In the end-stage of dementia, the person is likely to have limited, no speech or have difficulty in understanding what people are trying to say to them. However, the person with dementia may communicate differently by using body language, facial expression or show agitation.

Care tips

  • Use more gestures, body language, facial expression and touch to communicate with them
  • Maintain eye contact as much as possible
  • Be patient while waiting for their reply
  • Reminisce about things from the past
  • Continue talking as they may respond to the tone of your voice and feel a connection even if they don’t understand what you’re trying to say

As the end-stage of dementia, the person becomes less able to tell others of their pain or discomfort. However, there are some ways to tell when they are in pain and how to help relieve their pain.

Possible cause of pain:

  • Arthritis
  • Pressure ulcers
  • Urinary tract infections
  • Constipation
  • Other diseases

Care tips

Close observation to these changes can help tell when they are in pain:

  • Bodily changes : high temperature, sweating or looking pale
  • Behavior changes : agitation, irritation or inability to fall asleep
  • Facial expression : grimacing
  • Body language : appear more tense
  • Vocalisation : shouting, screaming or moaning

Some ways to help relieve pain:

  • Gentle exercises
  • Massage
  • Aromatherapy
  • Warm packs over the affected area
Doctors can also help to treat pain and any possible underlying medical conditions that may be causing the pain.

A person with end-stage dementia will slowly lose the ability to coordinate swallowing. Eating and drinking can be a problem at this stage.

Care tips

  • Speak to a speech therapist for advice on swallowing strategies and the best food consistencies.
  • Maintain a good oral hygiene to prevent infections due to aspirations
  • Be gentle and patient
  • Offer soft food or fluids that are thickened to reduce problems with choking
  • Don’t use straws; it may cause more swallowing problems. Instead have the person drink small sips from a cup or a small spoon
  • Try to ensure the person with dementia to sit upright while eating or drinking
  • Moisten their mouth by using lip balm to keep them comfortable
When their swallowing becomes completely impaired, you may need to consult with your doctor about what the next best step would be.

Contractures resulting from prolonged rest on bed can cause pain and may lead to the increase risk of fungal infections at the skin fold and pressure ulcers. Pressure injuries or pressure ulcers usually appear at any part of the body with constant pressure on, lack of blood flow and friction. Main risk factors being immobility, poor nutrition and hydration, reduced sensation and poor circulation.
As persons with dementia will not be able to let you know about the pressure ulcers, it is important to check these points to look for any skin changes – buttocks, elbow, hip, heels, ankles, shoulders, back and the back of the head and earlobes.

Care tips

  • Nurse the person with dementia on a ripple mattress
  • Reposition every 2 hours if bedridden and every 15minutes if chair-bound
  • Maintain good hydration and nutrition
  • Check pressure areas regularly
  • Maintain healthy skin – not too dry or too moist
  • Simple stretches in bed to improve blood circulation. Speak to a physiotherapist to learn about simple stretches that is suitable for the patient
Be sure to look for help and advice from healthcare providers when there are suspected of having pressure ulcers before it gets worse.

People in the end-stage of dementia have a higher risk of developing infections (eg. Urinary tract or chest infections).

Possible causes:

  • Low fluid intake
  • Swallowing problem
  • Reduce mobility
Be sure to seek for medical attention if infection is suspected.

During the last few days or hours, it is common for the person to have these symptoms:

  • Unconsciousness
  • Inability to swallow
  • Appear agitated or restless
  • Irregular breathing pattern
  • Cold hands and feet
The person at this stage is often unaware of the situation and care should ensure that they are not in any pain or distress.
Speak to your doctor or other health professional about the situation. They can explain the condition of the person with dementia better so you could understand what is happening to provide the appropriate care.

It is important to identify if there is already an advance care plan for the person with dementia. This care plan includes all information on their preferred care, this includes:
  • Where they prefer to receive their care
  • What they type of care they prefer
  • Who they want to speak on their behalf

It is important to try to meet the person’s cultural and spiritual needs and make sure that they are respected and supported. You can find out through looking at their advance care plan or by speaking to their close friends or family.

Support for carers and family

Supporting people with dementia at the end of life requires a lot of efforts and a team. Be sure to seek advices from close friends, family or healthcare professional if you’re unsure about anything. Please speak to your doctor, local NGO for dementia or hospice to assist you in your care for your loved one.

To care for those who once cared for us is one of the highest honors
– Tia Walker –

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