Involving the family and friends of people with dementia

Working alongside family at home to promote activities

If a family carer is used to chatting often with their relative who has dementia, it can be very stressful when the person becomes less able to follow conversation. And although carers may have developed a routine to help them structure their day with their loved one, even so, there may be periods of time when they are sitting together with little to say or do.

If you are working in a care home or a hospital, don’t assume that families or friends find it easy to know what to say or do when they visit.

What can visiting care workers offer to families in this situation? Simply having a friendly approach can give both the person with dementia and their relative a welcome break in the day. A big smile and a chat about what’s been happening in the world outside can feel like a breath of fresh air.

If time allows, make an activity out of sharing a cup of tea or choosing clothes and jewellery to wear. This can help give the carer a sense that you are providing social interaction as well as physical care.

For more on these ideas, you might like to look in the section on ‘Working in partnership’.

Involving people with dementia in daily tasks

Talk to the relative about having things readily available that might stimulate interest or prompt an activity. For example, having a couple of ‘half-done’ jobs lying around – such as a pile of socks that needs sorting – can sometimes provide an invitation to the person to carry on and complete it. One enterprising daughter always leaves something out for her mum to do, such as a potato with a vegetable peeler beside it or a jigsaw puzzle just started. Leaving out paper and pens may prompt the person to write or doodle. A pile of old birthday or Christmas cards to look at might also provoke interest and conversation.

Some carers do need encouragement to leave things for the person with dementia to do. They may have come to expect that they should do everything for their relative or prefer that household chores are done to their standard. It can be hard to question this when the carer is doing this with the best intentions, but they may need your help to understand why remaining active is so important. For example, you could say something like, ‘When your wife is folding up the towels, she is obviously enjoying feeling busy and needed, but she is also keeping some important muscles working well!’

Knowledge from carers can facilitate activities

Family carers and friends – with years of background knowledge of the person’s life experiences and preferences – may well know best how to spark the person’s interest in activities. Here are two examples from carers:

Marilyn and Elspeth

Marilyn looks after her mother Elspeth from Trinidad. She knows that whenever her mother is sad or agitated, singing religious songs will help her feel safe and relaxed. Elspeth’s home care worker has learned a few of Elspeth’s favourite songs so she can sing them with her while helping her wash in the morning.

Bill and Jane

The day centre manager told Bill’s wife, Jane, that he seems to get upset at the day centre when he is given the Daily Mail newspaper to read. Jane reminded her that Bill has always been very involved in left-wing politics and associates the Daily Mail with conservative and prejudiced attitudes. When the day centre gave Bill the Guardian newspaper the following week, he enjoyed reading it for over 40 minutes.

As dementia develops, interests may change

Sometimes, carers can be surprised that the person with dementia suddenly takes an interest in something that they have never been interested in before.

One daughter found her mother watching snooker on television, despite her mother never being interested in any sports before. It seemed that the colours and sounds of the balls and the soothing voice of the presenter of the snooker enthralled her. This makes sense in terms of the development of her dementia as some sports events are particularly accessible to a person with less cognitive ability and limited concentration – certainly easier than following a soap opera!

Some families might find it hard to adjust to these changes in the person they know so well. A man with dementia who becomes attached to a soft cuddly dog, for example, might seem very different to his wife or son – yet the dog is undoubtedly providing a source of companionship and comfort and this should be supported. Carers might need to talk this over with care staff and need reassurance that these kinds of changes are a perfectly normal part of the illness.

Like many areas in dementia care, this is an example of where what we need to change is not the person, but our own attitudes.

For more on these ideas, you might like to read the feature on Each person is different so get to know me in the section on Getting to know the person.

Activities that add to the stress?

A woman looking after her husband with dementia finds that he has taken to dismantling cameras or various pieces of equipment that he can find. This is stressful for her as the equipment is expensive and often can’t be repaired. However, the man seems to be having a very happy and purposeful time looking at all the parts, sorting and rearranging them.

If you were supporting this family, it would be important to help the wife recognise the benefits of this activity, but also to try to find creative solutions to the problem of expensive equipment being ruined. Charity shops and internet sites might offer sources for cheap cameras that can be dismantled.

Supporting families and friends on visits

John used to visit his longstanding friend George in a care home every Friday. He always joined in the activity group and seemed to enjoy this. The activity organiser found his involvement really helpful as other residents enjoyed his gentle charm and sense of humour. However, one week the activity organiser suddenly realised that John and George rarely had time on their own, and asked if John might prefer for George to be assisted to go to his room. John’s face lit up and he said that he would love to enjoy a bit of time just chatting on their own like they used to.

If you are working in a care home or a hospital, don’t assume that families or friends find it easy to know what to say or do when they visit. You might need to help by making suggestions about things to do together or where they might want to spend time. Encourage visitors to feel at home and direct them to tea-making facilities if these are provided. Do make it clear that they are welcome to use the dining room, the garden or a quieter lounge area for a visit.

You might also want to discuss the possibility of a relative taking their loved one home for a visit, and what the pros and cons of this might be. For some residents a trip out to the family home can provide a wonderful change of scene. For others, it might be quite a tiring and stressful experience, particularly if the person then doesn’t want to return to the care home.

You might want to have some specific resources available for relatives to use on visits, such as some board games, magazines or coffee table books and simple crossword or puzzle books (for example, Pictures to Share books – go to ‘Further reading and resources’ below). Consider having some games and toys available for any visiting children and the adults may well enjoy these just as much.

The use of iPads or smaller laptops with good internet access can create lots of opportunities for engagement (especially when involving younger people too), whether it is looking at a YouTube film of a sweet baby or a favourite singer or searching for a place or topic of interest to the person. Devices that have the option of enlarging print on the screen can obviously offer more to people with sight impairments. For more on this, look up the work of the charity, Alive!

As the person becomes more advanced in their dementia, families can find that the visits become harder as they will get less and less sense of whether or not the person is responding to them or benefiting from the visit. Some relatives might really welcome your thoughts as to what they can do, for example, you could suggest they give the person a hand massage or read aloud from a book or a newspaper. If it is possible for the person to go outside, this can provide some welcome opportunities for stimulation such as looking at birds or flowers in the garden.

If you notice any positive changes in the person when their relative visits, do point these out, for example, ‘Your father’s face really lit up when he saw you coming,’ as this can give much-needed encouragement.

NAPA produces a very useful guide for relatives. Go to www.napa-activities.co.uk for more information.

Involving family and friends in activities in care homes

Many activity organisers in care homes have discovered the benefits of involving carers in activities in the home, whether it is escorting residents on a trip out or helping to serve food and drinks at a special event. Involving families and friends may actually make your job easier and create more of a community spirit in your service.

Involving relatives and friends does need some forethought and planning. For example, are you asking the carer to help with looking after their own relative or friend for a specific activity or could they be a more general volunteer or helper?

Many family members and friends are keen to help where they can, especially when they see the benefits of activities for their own relative or friend. However, you need to check whether they feel they have the time and commitment to get involved and how often they might be able to offer this.

Some visitors might not be able to give their time but could have other things to offer, for example collections of music or DVDs to lend, fabrics, wool or hats for activity groups or contacts with community groups such a local church or golf club.

As with all volunteering, you are more likely to keep families and friends involved if you remember the following:

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