Dementia - coping with placement

When a person with dementia moves into residential care, the role of families and carers does not usually come to an end. Many people may choose to stay involved with practical caring tasks, such as assisting at mealtimes. Others become involved in the social activities of the facility. The level of involvement will vary with each individual.

Visiting is important to both resident and carer

Visiting is usually very important to both the resident and their family and carers. It is often the main way that families and carers stay connected with people they have cared for, even though they may no longer provide the day-to-day caregiving.

The person with dementia may enjoy seeing other members of the family or old friends. Encourage grandchildren to visit. If the children are young, prepare a visiting bag that contains treats and activities to keep them entertained. If allowed by the facility, bring in a pet.

Making visits more enjoyable

Visiting can sometimes be difficult, especially as the abilities of the person with dementia decline. Try to find some ways to make visiting as pleasurable as possible.

• Bring newspapers and magazines to look at together.
• Read mail together.
• Play games that have been enjoyed in the past.
• Listen to a tape of music or a story, or watch a well-loved video.
• Look at photo albums together.
• Help decorate and tidy the room.
• Help with personal grooming – washing or brushing hair, painting nails.
• Assist with writing to friends and relatives.
• Bring others to visit.

The person with dementia may enjoy an outing. Outings may include:

• A short drive in the car, perhaps stopping for afternoon tea
• A visit to another person in the facility
• A stroll or wheel around the facility garden.

Visiting in the later stages

Find an activity that will draw in as many of the senses as possible – sight, taste, smell, hearing and touch.

• Touch – a gentle kiss or hand holding can be reassuring.
• Sensory – massaging legs, hands and feet with scented creams or oils may be enjoyable for some people. The scent of perfumes and flowers can also be enjoyed.
• Facial expressions – a smile, a comforting gaze or a look of affection can often provide reassurance to a person with dementia.
• Music – for many people, music can provide comfort and familiarity.
• Visitors – visits from friends and relatives, even though they may not be recognised or remembered, can provide stimulation and comfort.
• Books – being read a favourite book or poetry can provide enjoyment.
• Walking – a stroll around the grounds, even if in a wheelchair, may be enjoyable for both the resident and visitor.

There is no correct number of times to visit or amount of time to stay. The important thing is to make each visit as rewarding as possible.

Parting

Leaving after a visit can be a difficult time for both the person with dementia and their visitors. Things you can try to make parting less stressful include:

• Take an activity to do with the person. Once you have finished this, it is time to go.
• Ask the staff to divert the resident or time your leaving for when a meal is about to be served so that there will be something else for the person to do.
• Let the person know at the beginning of the visit how long you can stay and why you have to leave. For instance, ‘I can stay for an hour, but then I have to go shopping’.
• Keep farewells brief and leave straight away. Lingering, apologising or staying a little longer can make future farewells harder.

Wanting to go home

A common phrase heard from people with dementia in residential care is ‘I want to go home’. This can be especially upsetting for families and carers. Wanting to go home may be caused by feelings of insecurity, depression or fear. It may be that ‘home’ is a term used to describe memories of a time or place that was comfortable and secure. ‘Home’ may be memories of childhood or of a home or friends who no longer exist.

Some things you can try:

• Try to understand and acknowledge the feelings behind the wish to go home.
• Reassure the person that they will be safe. Touching and holding can be reassuring.
• Reminisce by looking at photographs or by talking about childhood and family.
• Try to redirect them with food or other activities, such as a walk.
• Don’t disagree with the person or try to reason with them about wanting to go home.

Support groups

Dementia Australia coordinates a large number of support groups throughout Australia. Support groups bring together carers, relatives and friends of people with dementia under the guidance of a group facilitator, usually a health care professional or someone with first-hand experience of caring for a family member.

Families and carers may be looking after a person with dementia at home or where the person is in residential care. Many people find enormous comfort and practical assistance from attending these meetings with others who know what it is like to care for a person with dementia. Many facilities run relatives’ groups because they acknowledge the difficulties expressed by many families once the move has occurred.

Where to get help

• Your GP (doctor)
• Your local council
• Your local community health centre
• National Dementia Helpline, Dementia Australia Tel. 1800 100 500
• Aged Care Assessment Services Tel. 1300 135 090
• My aged care Tel. 1800 200 422
• Cognitive Dementia and Memory Service (CDAMS) clinics
• Carers Victoria Tel. 1800 514 845
• Carer Gateway Tel. 1800 422 737
• Dementia Behaviour Management Advisory Service (DBMAS) Tel. 1800 699 799 – for 24-hour telephone advice for carers and care workers