Small steps

The parcel, tied with a big purple ribbon, had been sitting on Mrs Grey’s bedside table for a couple of days. She picked it up now and then, sometimes even squeezed it a little, and then put it back, a small smile turning the edges of her mouth. When her daughter arrived to visit she spotted it immediately and, looking disappointed, asked her mother why she hadn’t opened it. ‘Well,’ said her mother after a while ‘… it’s nice… I thought I’d wait for you’. ‘But it was your birthday on Thursday’ said the daughter ‘we sent it through specially’. ‘Yes that was sweet of you’ she replied.

Families often fail to realise that loss of motivation can be a key feature of dementia.

So Mrs Grey’s daughter set about helping her unwrap the package. Out fell a smart new tracksuit, wrapped around a tube of badminton shuttles. Later she asked for a word with me. ‘I thought Mum would love it – she and her friends still play, you know. Well, at least they get together when they can and she quite often joined them until she started having these falls. Anyway hopefully this will get her to her feet again.’ Despite her best intentions, I knew that it was unlikely the shuttles would ever be opened.

It wasn’t the first time I’d seen relatives try to coax a loved one back to a previous activity in an effort to encourage their rehabilitation. Cook books, golf clubs, laptop computers, even a huge running machine (fortunately only the photo of it waiting at home, not the real thing wheeled in) have all been enthusiastically presented to patients whose progress is being hampered by the effects of dementia. But what families often fail to realise is that loss of motivation can be a key feature of the condition, and the person may no longer have the drive needed to get involved.

Getting on with an activity involves numerous brain functions, including:

• Recognition of the value of the activity
• Memory of the actions needed to carry it out
• Processing those actions together in the right sequence.

All of these functions can be affected in dementia. In particular it needs some impetus or ‘get up and go’. This originates in the frontal lobes of the brain (as does organising and planning actions) which may be damaged in dementia. Initially, as the ability to carry out a skill starts to fail, the person may be aware of their difficulties and consciously choose not to be reminded that they cannot do it as well as they used to. So they don’t even try. Later, even subconscious motivation may fade and gradually the impetus to do the simplest things, like get up or eat may be lost.

Of course when we feel ill or our mood is low, we all lose the motivation to do things – most of us will have spent days now and then in bed or on the sofa without getting up. So it’s always important to check for factors like illness (such as infection, anaemia or an underactive thyroid gland, pain and depression, all of which can cause lethargy and which can be treated.

Elsewhere on the ward a patient with more advanced dementia was giving the nurses a different challenge. Mrs Green had lost the motivation to eat. They sat with her, gently encouraging her to drink what had once been a favorite – strawberry milkshake. She seemed quite content but simply uninterested in food and not opening her mouth. It can be difficult for families to accept that the loss of motivation to do something as basic as eat or drink may be an irreversible part of the end stages of the disease that is dementia.

It’s good to encourage someone to keep active or involved in interests because this will help preserve existing skills. But listen closely and don’t push too hard.

However, earlier in the disease there’s no doubt that the efforts of family and friends may help to maintain quality of life. But it’s important to be clear about what is feasible and to keep expectations realistic. In the day room of the ward Mr White’s son had brought in a box full of parts of a clock. ‘I thought it might be nice to do a bit of work on it’ he said to his father. For years they had rebuilt vintage timepieces together. ‘He has such a vast knowledge’ said the son, ‘I know he has memory problems but this is old hat to him’. During visiting time he sat with his father and worked slowly on the clock. Mostly Mr White just watched but occasionally he would offer a suggestion about the clock’s mechanism. Although progress was slow, this was valuable time together for father and son, a chance to share a little and even stir up some memories.

So what should you be doing? It’s good to encourage someone to keep active or involved in interests because this will help preserve existing skills. But listen closely and don’t push too hard. Find activities you can do with them rather than leaving them to it on their own, ideally things where they can participate in small easy tasks (you can do the difficult stuff). Think in small steps and take regular breaks. Timing may be critical – avoid more challenging activities when they are stressed or tired and choose simple relaxing activities instead. Choose activities where you can share memories or meaningful exchanges such as:

• Putting together photo albums
• Cooking a meal
• Walking a favorite path
• Watching old movies.

In the end, just being together may be enough.