To mark this World Alzheimer’s Day – Ryan Tyler, an Alzheimer’s Society Local Services Manager in West Sussex, shares his advice on how best to navigate the complex forms of grief that can follow a dementia diagnosis. With almost a million people living with dementia in the UK and over 16,500 of them in West Sussex, this is important and timely advice.
Alzheimer’s disease is the most common cause of dementia. It’s thought that two out of three people living with dementia in the UK have Alzheimer’s disease. It’s a physical illness which, as it progresses, damages a person’s brain leading to them developing dementia.
Grief is felt on both sides of the relationship
When you are close to a person with Alzheimer’s (which is a form of dementia), you may both go through feelings of grief and loss. You are likely to feel these emotions at different times and in different ways. This can be around the time of their diagnosis, as their dementia progresses and not just when you might expect to feel grief.
The person with dementia may also have feelings of loss too and feel grief about their condition. This can start when they first notice they are unable to do the same things they used to, when they are diagnosed, or at any other point while they are living with the condition.
Ambiguous loss
Some people feel a sense of loss in their relationship, even though the person with the diagnosis is still alive, which can give rise to complex feelings like guilt, anger and grief. This may start when you first realise something is not quite right and before a diagnosis is confirmed. You may also feel that the person’s personality has changed and that they are not the same person. This can feel overwhelming and can be difficult to process.
This is known as ‘ambiguous loss’ or ‘living grief’ which many carers feel and can also impact the person with dementia but not in the same way. Dementia is a progressive illness. As a carer you can often see the changes far more clearly than the person with the diagnosis.
Some people with dementia are unable to accept their diagnosis, which can lead to you feeling alone or that you are carrying awareness of their condition by yourself. Equally, their pain may come out in different ways to yours, like resisting changes that might benefit them, changes in mood or sudden anxiety about something that would never have worried them before.
Anticipatory grief and dementia grief
You and the person with dementia may both feel a joint sense of loss as their condition progresses and your relationship changes. You may grieve for a short time as you experience these changes, or grief can be ongoing. Your feelings may also change or go back and forth over time.
How you and someone close to you with dementia experience grief can be affected by many things, such as:
- your personalities
- your relationship – both previous and present
- how dementia affects the person
- the type and stage of the person’s dementia
As dementia progresses, your relationship might shift from both of you supporting each other, to one where you take on much more caring responsibility. The person may become more dependent on support from you and others, which can be very difficult for you both to adjust to.
Feelings of loss and grief might make it harder for you to cope with caring. Some of the changes you both go through can be harder to process than the person’s eventual death. It is important to acknowledge any feelings you have and try not to feel guilty about them. There is no right or wrong way to cope with ambiguous or anticipatory grief while caring for someone.
Accept support, no one should face dementia alone
Caring for a person with dementia can have a huge emotional impact, and feelings like these can be difficult to cope with. It can be even harder if there are people around you who don’t fully understand or accept the impact the person’s dementia is having on you, including the person you are caring for.
Support is available, and it is important to ask for this if you need to. It can help to talk about your feelings with a trusted friend or family member, a professional such as a dementia support worker, dementia specialist nurse or counsellor, or other carers (perhaps by attending a support group). To find professionals or support groups, speak to your GP or local Alzheimer’s Society trusted Dementia Advisers (email: dementiasupportline@alzheimers.org.uk ), or visit our online directory.
You can also join the Alzheimer’s Society’s Dementia Support Forum to discuss your feelings honestly with people in similar situations. Whoever you are, whatever you are going through, you can turn to Alzheimer’s Society for help and advice. Call their helpline on 0333 150 3456 (open 7 days a week) or visit their website at alzheimers.org.uk
