Family, friends, and other people close to a person with dementia may experience feelings of grief, and similar emotions related to loss and bereavement.
People with dementia may experience grief at the point of diagnosis, and while living with the condition. They may also experience grief when bereaved by the death of someone close to them.
Grief is a normal response to a significant loss, but can become a complex psychological and emotional experience. It is common for someone who cares for a person with dementia to experience grief. This can occur while they are caring for the person and after the person has died.
Carers may experience grief as the person’s dementia progresses and increasingly affects their relationship with the person. They may grieve for the losses they and the person with dementia experience. Some carers may feel in a continual state of grieving.
The type of grief a carer may experience can depend on a range of factors such as their relation to the person (eg spouse, partner, sibling, child or friend), the type of dementia the person has, and the stage of dementia.
Grief can be difficult to detect as it can be shown in many different ways, including:
- not acknowledging losses
- longing for what has been lost
It is important to acknowledge feelings of grief when they occur. It is a complicated and highly individual experience – there is no right or wrong way to grieve. Carers may find that it changes over time.
People with dementia may also experience grief as their condition progresses. They may grieve for the loss of abilities, skills and independence. They may develop a sense of isolation as their environment becomes more unfamiliar and confusing. They may be frightened about what the future holds.
People with dementia and carers sometimes experience grief in anticipation of the losses the condition may cause. This is known as anticipatory grief. For carers this can happen throughout the course of dementia, and a person in the early or middle stages of the condition may experience it too. Some evidence suggests that carers who experience anticipatory grief may cope better with the grief they experience after bereavement, though this grief may still be painful. Sometimes experiencing anticipatory grief may also increase the possibility of a carer becoming depressed. It can help for carers to discuss their feelings while they are still caring for the person with dementia.
People can experience strong feelings associated with loss when a person close to them develops dementia. It can sometimes be more difficult to manage these feelings than it is to cope with practical aspects of caring. Depending on the carer’s relationship with the person, and their individual circumstances, they may experience the loss of:
- their relationship
- companionship, support and special understanding from the person
- communication between themselves and the person
- shared activities and hobbies
- freedom to work or pursue other activities
- a particular lifestyle
- a planned future
- previous relationship roles.
Loss and grief can play a part in someone’s ability to cope with caring. Some losses, such as the loss of meaningful, interpersonal relationships with the person with dementia, can result in grief that may be more difficult to manage than the person’s actual death.
As dementia progresses, a relationship may move from one that was mutually supportive to one where the carer takes on more responsibility. The person with dementia may become increasingly dependent on their support. This can be very difficult to adjust to.
It’s important that carers seek support for emotions associated with loss. Family members, friends or professionals (eg a dementia support worker) could provide this. Attending support groups with other carers, or accessing an online forum can be good ways to seek support and information.
It can be difficult for a carer to manage these feelings if others don’t see the feelings as significant, or don’t appreciate or understand them. Those around the carer may be in denial or not fully understand the impact dementia has. This can lead to a lack of support for the carer.
Some carers also struggle with a more psychological sense of loss in the relationship (also known as ambiguous or unclear loss). The personality of the person with dementia is seen as lost or considerably changed, but they are physically still present. Ambiguous loss may result in feelings of unresolved grief, and can also stop people from accessing help and support.
It is normal for someone caring for a person with dementia to experience feelings of grief. They may cope well at some times, and at other times feel overwhelmed by sadness or anger, or may simply feel numb. They may feel resentful at how things have turned out and the difficulties they have to face. Some people may be shocked to find that they feel this resentment. It’s important to know that caring for a person with dementia can have a huge emotional impact, and feelings like these can be a normal part of grieving. Anyone experiencing such feelings may be under a great deal of stress, and may need to seek some emotional support.
Dealing with emotions: tips for carers
- Try not to bottle up your emotions: talk about your feelings. This may be with a professional (eg a dementia nurse), other carers (eg via a support group), a friend or family member.
- Try to make time for yourself each day. This could be relaxing, walking outside, a hand massage or chatting to friends.
- Consider your own needs. If you feel that you need a break to help you cope, speak to someone about arranging this.
- Try to focus on the positives, for example things that you and the person with dementia can still do together, or other interests you have.
- If you’re feeling low or anxious, or are very tired or not sleeping, speak to your GP. It’s important to look after your own physical and mental health.