Letting go without giving up: Impact of the Move on the Person with Dementia

The person with dementia may have had little input into the decision to place him or her in a care home and the experience of being moved from familiar surroundings and familiar faces can be extremely unsettling. This can result in challenging behaviour or a deterioration in the person's condition but steps can be taken which may help the person adjust and settle more quickly.

Even if the person cannot express feelings and wishes verbally, he or she may still be upset at leaving home. Try to understand and accept those feelings. Try reassuring the person that you will be visiting regularly, taking him or her on outings, and so on.

Talk to staff at the home – they may have ideas on how to help you and the person adjust to the change. The person may be very low in spirits for the first few weeks but some people settle in very quickly. Be prepared, though, for the person to feel very unsettled. Often someone with dementia asks to go home. Sometimes, the person will say this to relatives and care home staff alike, sometimes he/she may only say this to the family either because he or she doesn't want to confide in strangers or because it seems impolite. You may want to discuss with other family members and staff how you will respond if the person asks to go home – it can help if you are all consistent and help you feel more prepared for what one carer described as 'an emotional body blow'.

Ask staff how your relative seems when you are not there; it may be that he or she remembers what has changed more when familiar people visit and is settling in quite well the rest of the time.

On being admitted to the care home, the person with dementia may experience a range of difficulties, including disorientation, deterioration and frustration.

Disorientation

Leaving a familiar environment where you feel safe and comfortable to move to a place where all the faces, smells, sounds and colours are unfamiliar can be really frightening and confusing.

We took some things in to try to make her feel more secure in the first few days. For example, her unwashed pillow slip and nightie, for a familiar smell, and her old sofa because she was used to it and sat there all the time. Smell is especially important to my mother because she's blind.
- Daughter

Deterioration

Deterioration of the person's condition may or may not have prompted the admission to long-stay care; however, it is not unusual for a person's condition to get worse on admission to a care home. The unfamiliarity of the surroundings can mean, for example, that the person can no longer find his or her way to the toilet, which can cause him or her to become incontinent. The person will also not be receiving the one-to-one care that he or she received at home.

Frustration

The person may have great difficulty in getting unfamiliar care home staff to understand his or her wants and needs, which can lead to anger or aggression. The person may also be used to having more freedom of movement than the home may be used to providing.

The person is undergoing huge changes in his/her life and there are bound to be changes in behaviour and even deterioration in the condition. Often, homes will suggest that a carer stays away for a few days to allow the person to settle in. This is no longer seen as good practice and carers should decide what is in the best interests of the person with dementia and themselves.

On the day of the move, try to make sure that when you leave, the person is occupied with something positive, such as a meal and thus distracted from the fact that you are leaving.

We took Mum's favourite music with us and made sure it was on when she arrived.

Letting go without giving up: continuing to care for the person with dementia