Coping with Caring

Transcripts of films 3-5 from Practical caring chapter

Film 3: dressing
Film 4: apathy and loss of interest
Film 5: safety in the home


Film 3: Dressing

When my dad saw all his shirts in the cupboard he just couldn´t choose and got confused and upset. So now I put out a couple of his favourites. Now he quite happily chooses which shirt he wants to wear.

  • Allow the person plenty of time to get dressed and make sure the room is warm and they have used the toilet first.
  • As a general rule try to avoid doing too much for them – give reminders instead. This will help maintain their confidence.
  • Allow them some choice, and lay out clothes in the order they will put them on. Never leave them entirely naked.

If they have had a stroke and have been left with a weakness in a limb, place that limb into the clothing first. If the person is incontinent, easily-washed clothes are more practical - but some people with dementia may not feel comfortable or dignified in clothes that are different from what they used to wear.

Slippers should only be worn for short times, as well-fitting shoes give support and reduce the risk of foot problems. Put clothes for washing out of sight to prevent the person putting them on.

Appearance and personal care

My mother gets a real boost from her fortnightly visit to the hairdresser. I always try to make sure she has a little makeup and nail varnish on as she always used to wear it and I think it makes her feel more self-confident.

In time, dementia can cause the person to forget how to do even the basic tasks. Remind and encourage them to do what they can for themselves.

Remind them when to brush their teeth. It may help if you brush yours at the same time. You may have to brush their teeth for them. Dental care is vital, so regular check-ups are essential.

Check finger and toe nails regularly too. If you can´t cut them, arrange for a podiatrist.

Men may need to be reminded, or helped, to shave - and using an electric shaver is far safer than a blade.

Bathing

My dad hated me helping him in the bathroom. I told him that he used to do it for me when I was wee and now it was my turn. I think he´s got used to it now, and thinking of it that way made it easier for me too.

The person may forget to bathe or how to wash themself, and might not like being supervised. Help with intimate care can be difficult. Try to make bath times as pleasant as possible, making sure the room is warm.

A non-slip rubber bath mat is useful. You may have to help the person in and out of the bath. A bath seat or handrails may help. Ask an occupational therapist for advice.

If the person baths alone, make sure the door can´t be locked. Washing intimate areas can be awkward and embarrassing, but is important. Try giving the person the sponge or cloth and guiding their hand. Some people may find it easier being bathed by someone they don´t know, such as a nurse or care assistant.

Ask your health visitor, doctor or social worker for advice. People who go to a day centre may be able to have a bath there.

Managing incontinence

My mother would try every door in the house looking for the toilet, so I put a sign on the door saying Ladies.Some people with dementia may become incontinent of urine. But bowel incontinence is not common until very late in the illness.

If they do become incontinent don´t just accept it as part of the illness. They may just have forgotten how to find the toilet, or not realised that they needed to go. Incontinence can also be a result of an infection or some physical problem. Consult the doctor or community nurse.

But sometimes incontinence is a result of the degree of brain failure due to dementia.

If it cannot be treated ask your GP to arrange an assessment by a community nurse or continence advisor, who can supply equipment such as pads and bed protectors.
Make sure they show you how to use them.

Watch for any signs that the person may need to go to the toilet such as restlessness or agitation.

Take a matter-of-fact approach, to reduce embarrassment. It may help simply to remind them to go to the toilet at regular intervals.

Zips or buttons can be awkward to undo in time, and Velcro fastenings are a good alternative.

If the toilet is not easy to get to, try a commode.

Sometimes soiling is caused by severe constipation. Maintaining a well-balanced diet with plenty of fibre and enough to drink helps prevent it. Don´t use laxatives unless the doctor has prescribed them.

In some areas there will be a laundry service for help with soiled linen - the social work office can help with this.
Call the Dementia Helpline on 0808 808 3000 for an advice sheet on continence management.

Eating and drinking

People with dementia may have poor appetite or forget to eat or drink. They may lose weight or become dehydrated. They may forget how to eat a meal and become messy.

Allow plenty of time for meals and tell the person which meal it is and what there is to eat - prompt them. As far as possible, try not to feed the person yourself as this can encourage the person to become more dependent.

Try not to worry about table manners!

If weight loss is a problem, put out snacks.

You can make forks and spoons easier to hold by wrapping the handles to make them thicker.

If the person suffers from night time indigestion, try having the main meal in the middle of the day. The social work department may be able to help with a meal delivery service or home care. If the person loses weight, will only eat limited foods, or has lost their appetite, consult the doctor.

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Film 4: Apathy and loss of interest

Over the last year my mother has found it very hard to get herself organised to do things. But I find if I get her started, like sorting out her sewing box, she´ll then enjoy doing it. Each day should have something of interest for the person, such as going for a walk, listening to music, cards, or gardening. Involve them in choosing what to do. There may be jobs around the house that they can manage. Try to get other people involved, like friends to chat to. Though sitting back and doing nothing can also be enjoyable sometimes!

Hallucinations and delusions

Some people with dementia may hear or see things that are not there, especially with Lewy Body dementia. These are hallucinations. More often they misunderstand what they see, like mistaking a reflection for a person. Consult the doctor. It could be because of an infection or a side effect of medicines. If the hallucination is real for them, it is pointless trying to persuade them they are imagining it. Be sympathetic and reassuring. Sometimes people believe things, which aren’t true – these are delusions. Reassure them - if you´re positive they´re mistaken.

Depression and anxiety

I think the thing that made Mum feel at her lowest ebb was when she was confronted with the things that she couldn’t do for herself any longer, because she was so independent and when she would attempt to do things and it didn’t go well she would get very distressed. So we concentrated very much, as a family, on trying to keeps things as normal as possible for her, to keep her involved in doing the things that she had always enjoyed doing but to give her help in a subtle way so that she didn’t appreciate that she was really being supported, she felt she was still managing to do things for herself.

I think we noticed my dad was becoming more anxious when my mum had been out for a while and when she came back, he would say ‘where have you been, you’ve been away a long time’ and that became more difficult, so that she was only able to leave him for shorter spells because he seemed to be anxious and depressed when he was left alone.

Wandering

Sometimes when he goes out to the shops he doesn´t come back and I have to go and find him. When I find him he´ll smile and tell me he´s glad to see me and he´s just had a nice long walk.Just because the person may not be able to explain it, does not mean walking about is aimless wandering.

Don’t try to prevent it if there is no real risk - it’s important the person has as much freedom as possible. Ask yourself: Are they bored? Do they need exercise? Have they forgotten where they were going? If they’re going out at night they might be mixed up about the time of day, looking for the toilet, or sleeping too much during the day.

  • Increasing daytime activities may help. Make sure they’ve been to the toilet before bed. A dim light on in the bedroom may reduce confusion. Make sure the house is as safe as possible at night so you don´t have to worry about the person walking around. An occupational therapist may be able to help, and in some areas, a night care service may be available.

If they keep going out and are not safe, ask the doctor for a specialist assessment. Call the Dementia Helpline on 0808 808 3000 for more help.

Changed behaviour

She would follow me around everywhere, driving my patience to the limits. Now she loves going to the day centre twice a week, and I get time to myself. Sometimes someone with dementia may feel insecure and want to be with their carer all the time. Plenty of reassurance from you is important, and remember that your wellbeing is important too, so ask for help from friends or family to give you a break. Consider support services to give you time off.

The person with dementia may sometimes do things that are odd or embarrassing to you. Explain to others what is happening and don´t over-react. If someone starts to undress they’re probably uncomfortable. Take them calmly to another room, check they’re not too hot or needing the toilet. Remember, it is the illness causing the behaviour, not the person doing it on purpose.

Anger or aggression

Some people with dementia can be aggressive at times, even when they never used to be. It´s because the person is frustrated or misunderstands things. This is the dementia, not a reaction to you. Remain calm if you can. Speak calmly and remind the person what’s going on around them. Try to distract them. Talk to someone you trust and see if you can figure out what caused the problem, and if anything can be changed to prevent it happening again. If you are worried ask the doctor for a specialist assessment.

Sex and intimacy

My wife and I had a very close physical relationship but since she was diagnosed four years ago, she has gradually lost interest. It bothered me at first but we hold hands and cuddle a lot, and we still share a bed, and that helps me feel close to her. The person´s attitude to sex and sexual relationships may change. They may lose interest in sex altogether, or want sex more often. If it is your partner you are caring for you may feel different about sex too. You may or may not want to carry on your sexual relationship - or might worry about whether you should.

Sometimes a person with dementia may approach the wrong person sexually. They may have mistaken who it is or have lost inhibitions. Stay calm and try to distract and reassure them. Remember it’s not their fault. It can be difficult but try to discuss the situation with a professional you trust, such as your doctor, community psychiatric nurse or Alzheimer Scotland.

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Film 5: safety in the home

The gas company fitted an isolation tap to my grandfather´s cooker. He cooks when the care-worker’s there, who turns it off when he leaves. Your gas company will have a register for people who are disabled or over 60 who may have special requirements, and can provide a free gas safety check every year. Electrical appliances need to be checked regularly too. If the person cooks or lights a fire, make sure they can do this safely. Fit smoke alarms, and use a fireguard, hooked on to the wall.

My wife came to me and asked me "do you want me to make a cup of tea for you?" And I said "yes" and off she went. I was waiting and waiting and she came back again and asked "do you want a cup of tea?" I was puzzled and again I said "yes". Betty came over to me and said "the kettle´s not working".

I thought it was an electrical fault. I went with her into the kitchen and I saw the kettle on the oven/cooker, and the kettle had melted and was stuck on the hob. So the next day I bought a new kettle. Betty came over and asked me "do you want a cup of tea?" I said yes. She came back unsure and muttered to herself "what was I going to say?", and then asked again "do you want a cup of tea?" I said "YES!" So she went away and came back saying "the kettle´s not working". I went to the kitchen, with Betty, and I was irritated to see it had happened again. I felt there was something wrong with my wife.

Cleaning fluids etc should be out of reach. Ask an occupational therapist for help with safety equipment. The social work department can assist with monitoring systems, which can sense risks.

I tried to get my husband to stop driving but he wouldn´t listen. I even tried hiding the keys but he just got angry. In the end my son took a vital piece out of the engine so it wouldn´t start. Generally people with moderate to severe dementia will not be able to drive, however, some people early on in the illness may continue to drive safely for a while.

Encourage them to get used to other forms of transport such as buses and trains. If the person isn’t safe to drive, discuss it with them, and contact the DVLA. If they do not want to stop driving ask other carers how they handled the problem. It may be easier if someone in authority tells them to stop, like the doctor or the police. Groups such as the WRVS may be able to help with transport needs and some councils have taxi schemes for disabled people.

Smoking and alcohol

In relation to someone’s drinking, it’s really quite important that you talk with the doctor to make sure that it’s safe for them to continue to drink and it’s not contraindicated in their condition. In relation to smoking, particularly, obviously, we would like to encourage everybody to stop or certainly to cut down but if the person’s going to continue smoking, you perhaps need to look at some safety ideas such as fire retardant furniture or fire retardant clothing or making furniture that they’re particularly fond of, getting that fireproofed.

You might want to perhaps use a bigger ashtray, which is harder for them to miss. You would certainly, as I said, encourage them to cut down or, if you can get them to stop, you might want to use nicotine replacement products to help them to do that but it is important that if they are using nicotine replacement products for them not to smoke at the same time. If you really are concerned about someone’s safety and want to supervise them smoking, you might want to put the matches or lighter out of reach so that they will only smoke when someone is there to supervise them.

Medicines

When I looked in my father´s medicine cabinet I found almost twenty different prescription drugs. I checked with his doctor which ones he actually needed and took the rest to the chemist to dispose of.

Take special care over medicines so that the person doesn’t forget to take them or take too many. Do not leave it to the person with dementia. If you cannot supervise medication there are several ideas which might help - ask the pharmacist. Keep all bottles clearly labelled and locked away. Make sure you are clear about which medicine to give and when. Make a note of any side effects and inform their doctor. Inform the doctor about all medicines they are taking, even over the counter ones. These may cause problems when taken with other medicines. Get rid of any medicines not in use.

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Reviewed 29 July 2014

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