Staying involved

Visiting is usually very important to both the person with dementia, their family/whānau and those who have cared for them, as a way of everyone staying connected.

The person with dementia may enjoy seeing other members of the family/whānau or old friends. Children should be very welcome in residential facilities, so encourage grandchildren to visit. If they’re young, think about preparing a visiting bag that contains treats and activities to keep them entertained. If the facility allows, think about bringing in an appropriate pet.

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

• bring in newspapers and magazines to look at together
• read mail together
• play games that have been enjoyed in the past
• listen to music recordings, or audio books
• watch a well-loved movie or home movie
• look at photo albums together
• help decorate and tidy the room
• help with personal grooming – washing or brushing hair, painting nails
• help with writing to friends and relatives.

The person with dementia might also enjoy an outing.

You could try:

• a short drive in the car, perhaps stopping for afternoon tea
• a visit to another person in the facility
• a stroll or ride in a wheelchair around the facility’s garden.

Leaving after a visit can be a very difficult time for both the person with dementia and their visitors.

To make it easier, you might try:

• taking something to do with them, and once you have finished it’s time to go
• asking the staff to divert the person’s attention, or leave when a meal is about to be served so there’s something else to do
• letting the person know at the beginning of the visit how long you can stay and why you have to leave – for example, “I can stay for an hour but then I have to go shopping”
• keeping farewells brief and leave straight away – lingering, apologising or staying a little longer can make future farewells even harder.

A common phrase heard from people with dementia in residential facilities is “I want to go home”, which can be very upsetting for visitors

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. It may be memories of childhood, or of a home or friends who no longer exist.

• Try to understand and acknowledge the feelings behind the wish to go home.
• Reassure the person they will be safe – touch them or hold them to reassure them.
• Reminisce with them 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 or try to reason with them about wanting to go home.

A point to note is that if you did take the person home, it might not be what they really want as it is not usually a house or building the person with dementia is referring to but the desire to be in a place that is comforting and familiar.

Doing things that use as many of the senses as possible – sight, taste, smell, hearing and touch – are a good thing to try.

Depending on what the person with dementia enjoys and needs, you might try:

• massaging legs, hands and feet with scented creams or oils
• bringing in perfumes and flowers so they can enjoy the scent
• a gentle kiss or hand-holding for reassuring contact
• let them see you smile, looking at them with affection
• play music, which they may find familiar and comforting
• visits from friends and relatives – even though they may not be recognised or remembered, they can still stimulate the person, giving them feelings of comfort and familiarity
• listening to a favourite book or poem being read
• a stroll or push in a wheelchair around the grounds.

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

Your local organisation coordinates support groups for people with dementia, carers and includes special interest groups, such as men who have caring roles and support groups for younger people with dementia.

Many people find comfort and practical help by going to meetings with others who know what it’s like to either live with dementia or care for someone with dementia, whether they’re at home or in a residential facility.

Support groups bring together families and friends of people with dementia under the guidance of a group facilitator. The facilitator is usually a health professional or someone with first-hand experience of caring for a person with dementia.

Many facilities run relatives’ groups because they understand the difficulties many families face after the move has happened. Find out if the one you are associated with, or planning to become associated with, runs such groups.

There’s support available for both you and those who support you. Your local organisation or your GP can let you know you about services in your local community.

These might include the following:

• information, education, support and advocacy services offered through your local organisation
• support with ready-made meals
• subsidised taxi chits to help with transport costs
• support through your Needs Assessment and Service Coordination Service (NASC) such as: assistance with household tasks, assistance with personal care needs, such as showering, dressing or supervising medication, day programmes, carer relief, respite services and residential care.