End stage dementia care: What you need to know

It can be traumatic to watch a loved one with dementia nearing the end of their life. But knowing what to expect in the end stage of dementia may bring you some comfort. Find out what might happen

On average, a person diagnosed with Alzheimer’s disease, for example, could live for another 10-12 years, and many of those years can be made happy and enjoyable. However, none of us are immortal and no matter how well you care for a person with dementia or how much you love them, at some point their dementia journey will reach its end.

As difficult as this may be to accept, many people do find the final stage of the illness easier to handle if they are prepared and can do their best to ensure the person they care for experiences a peaceful and dignified death.

Respect their wishes

Hopefully you will already have given end of life care some thought and have some idea what the person you love would like to happen. Perhaps you’ve encouraged them to make an advanced decision or to have a DNAR (Do Not Attempt Resuscitation Order) in place. Ideally, they will have given you their views about important issues such as whether they’d like to remain at home and who they may want to visit them, including spiritual advisors.

Tip: If the person you care for has refused to discuss this subject with you, it’s worth asking other friends and family if they’ve mentioned anything to them. Sometimes people nearing the end of their life don’t want to share this kind of information with their children or younger relatives but will talk about it more easily with friends and peers.

What are the warning signs that life is nearing an end?

Generally speaking, as the person you care about reaches the end of their life the symptoms of dementia may become increasingly pronounced, which can obviously be very upsetting to witness.

For example, you may notice:
- Difficulties eating and swallowing
- Double incontinence
- Little or no speech
- Limited mobility – they may be bed bound

However, these symptoms don’t necessarily mean that death is imminent. Some people can live with these symptoms for weeks or even months. It’s also important to remember that people with dementia don’t always die from dementia. In fact, around two thirds die from pneumonia.

Why does this happen?

As the person you care about become increasingly frail – physically and mentally – you may find they succumbs more easily to infections, or are more likely to have a fall or accident which leads to a hospital stay and can, in turn, cause further decline until they become very weak.

Signs that death may be very close include:
- Irregular ‘stop start’ breathing
- Inability to swallow
- Cold hands and feet
- Agitation or restlessness
- Drifting into unconsciousness

You aren’t alone

Watching a loved one die is undoubtedly painful and harrowing, however you should both receive support from professionals. Whether the person with dementia is at home or in a care home or hospice, they should, according to government guidelines, receive care which manages their pain and symptoms and provides ‘psychological, spiritual and social support.’

What you can expect

Nursing
If your loved one is at home, they should have regular visits from their GP, and nursing care from a community nurse or nurse skilled in palliative care. Carers might also be available, particularly during the night so that you can get some rest yourself.

Equipment
Palliative nursing often requires special equipment which should be provided free of charge, such as special hospital-like beds and commodes.

Medication
A wide range of painkilling medication is available to people in the last days of life, to make sure they are as comfortable as possible. If they have difficulty swallowing, medication can be given as an injection or as patches which are absorbed through the skin.

But what if they are in pain?

For relatives and friends, this is usually the biggest worry of all, especially if the person with dementia can no longer talk or communicate. However, there are still several ways to work out if they are experiencing any pain or discomfort.

For example,
- Do they look sweaty or pale?
- Are they grimacing or pulling faces
- Do they seem tense or unable to sleep?
- Are they moaning or shouting?

If you notice any of these symptoms – or something similar – make sure you let their nurse or doctor know, as stronger medication may be necessary.

Letting go

If you’ve been their main carer for a long time, it might seem strange to suddenly have professionals taking over. Maybe you don’t know what to do or how to behave?

Here are a few ideas:
1. Sit quietly with your loved one. Just being there at the bedside can be very peaceful and you don’t have to talk all the time.
2. If they’re awake, do they have something pleasant to look at? Can they see the garden, a favourite photograph or painting, or a flower arrangement?
3. Make sure their room has soft lighting. You may want to have some of their favourite music playing quietly in the background. If you feel it would bring comfort, arrange a visit from a spiritual advisor or member of the clergy.
4. Hold their hand. Gentle touch can provide great comfort, even if they don’t seem to be aware of it.

Good to know

Caring for someone in the final hours of their life can be a very intense and intimate experience, allowing you to feel a deep connection with the person you love. Helping someone with dementia to experience a ‘good’ death may be, after all, the final gift you can give them. Many family carers say afterwards that knowing they did their best, right to the end, brought them considerable comfort in the months ahead.