Dementia Dilemmas

For most people, it’s a huge step to stop driving a car: it means admitting a problem, and it means changes to daily living. But the research is clear that people with dementia are more at risk of having a car accident or getting lost.

What can others do to support this process? It can be especially difficult if the person with dementia doesn’t want to discuss it or is not aware of the difficulties they are experiencing.

First, try working with your uncle to keep a record of his driving. Note down any difficult situations: busy intersections, travelling to new locations, car parks? How often are these troubles occurring?

Find out about alternatives. Do some research to find out about public transport, help with transport from a care provider, or local taxi companies. Think about all regular journeys, and make a plan for how these might be managed differently in future.

Get support with making the decision. This may mean going to the GP or an eye doctor (to check vision), looking for information online, or speaking to a wider circle of family and friends about the issue.

It’s a particularly difficult issue, and one we see come up again and again – but for everyone’s sake, it needs to be tackled sooner rather than later.

For more on this, look at Dementia and driving: a decision aid, produced by the University of Wollongong, or find out about this driving cessation program for people with dementia being run by the University of Queensland: CarFreeMe.

You need to change the way you communicate with your husband because he has a diagnosis of dementia – and dementia affects communication, profoundly so. 

It is understandable to feel very frustrated, but it might help to remember that the communication changes are caused by a physical change in your husband’s brain. If your husband had a broken leg, you would change how you supported him in day-to-day life. He is not deliberately trying to be difficult. 

Lots of everyday communication is affected by dementia. Answering a simple question (“Did you see the doctor last week?”) or following a clear plan (“Let’s meet outside the supermarket at 10 o’clock”) both depend on short-term memory. When a person with dementia says the same thing over and over, this may well be happening because they have forgotten what they’ve just said. 

What can you do? Speak patiently and clearly. Ask simple questions that don’t depend on having a good memory. Include gentle reminders within a question (“Did you enjoy eating that chocolate cake for morning tea?”). Offer choices that the person can see (‘Would you like this apple or that orange?”). Watch out for distractions that may confuse your husband. Keep a check on your expectations. Make sure you get regular breaks from direct caring. 

There is lots of information available about communication in dementia. Search online or consider going on a short course to learn more. We have put together a short booklet on communication which you may find helpful: Practical Tips for Conversation and Social Events. Another good resource from Alzheimer’s WA is Communication and engagement.

This is a common situation for family carers, and an utterly exhausting one. 

It is worth trying a few options. The first attempts may not work, but persist with it. 

Try visiting a day respite facility with your wife. Spend an hour there and see how she responds to the people and the place. Explain your situation to staff. They may be able to help as they will have seen this many times. If they have a good approach, there is a chance they will be able to coax your wife away from you, without her becoming upset. 

You could try having a care worker come to spend time with your wife at home. You could be there initially, and hopefully over time she will come to feel comfortable with this care worker. 

If you’re still stuck, call on help from family or friends and see if your wife responds more happily to a more familiar presence. 

Look for clues in all these situations: is she brighter in certain situations, or with certain people? Does she seem anxious about something in particular, that could be dealt with? Is there an activity that she enjoys doing that someone else could do with her? 

As you know only too well, your wife depends on you, and your own health and peace of mind deserves care too – and respite could be critical for that. 

As ever, there are resources online to support people in your situation. A good one is Rethink Respite: A Respite Decision Guide for Carers of People Living with Dementia from the University of Wollongong. We have also produced this booklet which you may find helpful: Understanding and responding to changes in behaviour

Dementia does bring about so many changes, and one of the most difficult is this change of roles in relationships, and the grief and loss that comes with that. 

Where once you were husband and wife, you now feel as though you’re ‘just’ your husband’s carer. Your identity has changed, and your relationship has changed. It’s deeply painful territory. 

It may help to have some counselling to talk through all the issues you’re facing. With a counsellor, your needs and feelings would be the focus. 

Consider meeting up with others who are going through the same thing, at a support group. You will realise it’s not about you or your relationship as such, it’s the painful fallout of supporting someone with a complex illness. It doesn’t necessarily have to be a support group for carers of people with dementia – it could be a general carers group. 

Could you keep up doing one or two things that you used to enjoy together, even if it is in a simpler, shorter, or more local form? Could you join a social group for people with dementia and their carers – and in this way get to socialise alongside your husband, but get to meet other people in your situation too? 

This booklet on Living grief and bereavement is aimed at family carers of people with dementia and looks at this exact topic.

Generally, a person with dementia can still make decisions about what they want, although it may become more difficult and even impossible if the illness is very advanced. 

People with dementia can communicate in a wide range of ways about all sorts of needs and topics – from smaller things (like position of a pillow or the taste of food), to larger matters (where they want to live). So it is important that an attempt is made to involve people with dementia in all decision making about their lives – unless it is very clear that they lack the capacity to make a decision on a particular matter (this is usually decided by a medical practitioner). 

It is possible for people to retain ‘mental capacity’ on certain matters (say a decision about medical treatment), but be unable to make decisions on other matters (for example, more complex financial transactions). 

Getting a clear diagnosis of dementia (rather than avoiding the topic for years) can help everyone face and plan the future. It gives the person who is diagnosed and their support network around them the chance to think and talk through major decisions about their future life and care. 

Setting up proper formal arrangements for future decision-making – for example, an Enduring Power of Attorney where you nominate specific people to take this on for you in the future – is an important step, best set up in the earlier stages of dementia. An Advance Care Directive can set out clear preferences around a person’s care towards the end of their life. 

Start2Talk is a good website developed by Dementia Australia, on planning ahead for people with dementia. Another good resource is Supporting decision making: a guide for people living with dementia, family members and carers, from the Cognitive Decline Partnership Centre in Sydney.

There could be a few things going on here. To begin, many people with dementia say they experience a lot of changes to their sensory responses. Their sense of taste and smell, for example, often becomes less effective. Meals may need to have a stronger flavour to be appetising. Eating immediately after a meal is prepared could help too, as the cooking smells may help prompt your father to eat. Eating with others can sometimes also help. 

There are ways you could make some savoury items sweeter – a compromise which may mean they are more likely to be eaten (for example, adding a sweet tomato sauce to accompany a meal). Or you could try using vegetables in sweet items – for example a lot of vegetables can be incorporated into sweet muffins and cakes. Some vegetables can be added to smoothies and juice drinks.

It could be an issue with memory: your dad may simply be forgetting to eat, forgetting where the food is stored, or losing track of time. Reminder signs and messages may help – if placed in the ‘right’ position to catch his attention (‘Remember: lunch in fridge’). 

It could also be an issue with medication he is taking – some medications can lead to sweet cravings. Ask the GP about this. 

An excellent resource on sensory changes in dementia is a book called Talking Sense, by Agnes Houston and Julie Christie, published by HammondCare and available to view online. Another good resource, Eating well with dementia, includes practical strategies for common eating difficulties in dementia.

This is another difficult but very common situation. Discussing this is potentially awkward for you both. It is worth trying to have a conversation about it though, perhaps several attempts. 

There may be something specific stopping your mother having a shower. Go into the bathroom area with her, and ask her to show you how she’s getting on with using the shower at the moment. Does the space work well? Are there any changes that need to be made to the environment? Is she anxious about something? Would she feel happier if someone was there with her? She may struggle with the direct contact with the water or with adjusting the taps or temperature. Using a wet sponge instead may be simpler. 

She may be forgetting to have a shower. You could try bringing in one or two new items that may help remind her to use the shower more regularly. For example, you could buy her one or two new towels, or some lovely smelling soap, then check if they’re being used? 

Often family carers say they have to accept things not being quite the way they always were – and so if your mum showers much less often this may actually be ok. 

The Better Health website has some good information on ‘Dementia: hygiene’. This information on ‘When people with dementia refuse help’ looks at a few different situations and offers strategies to respond.

It is true that people with dementia may ‘confabulate’ – which means they make up stories to cover up for the gaps in their memory. Some people with dementia may confabulate a lot. 

To some extent, people with dementia are constantly having to adjust for their gaps in memory – like anyone, they want to present well, be sociable, appear in control. And to do so without a good working memory may involve saying some things that are not true or not absolutely true. It all starts to get a bit hazy – which can be confusing and difficult for everyone else. 

It is also true that when it comes to dementia, try to tune into the feelings rather than search for facts. Feelings are a good guide to what has been happening for them. So look for the feeling content in what a person with dementia is telling you. Are they repeatedly telling you stories that involve fear, or feeling left out, or losing things? It may be a clue that something factually is wrong, but they can’t say so with any details or accuracy. 

The problem of truth and lies is difficult for the wider network of family and friends to juggle (‘he said’/‘she said’ and so on). A family and support network that has good, regular communication can accommodate this sort of challenge, but many families struggle with this.