Most parents have little or no problem cleaning up children who have toileting or personal hygiene accidents. Personal care is tackled in a practical and matter-of-fact manner. How different this becomes when the person you are caring for is an adult – perhaps a parent, brother or sister. You enter an emotional minefield. There are your own and the feelings of the person for whom you are caring to think about.
Early stage dementia
In the early stages of dementia, most people will retain their abilities and only need minimum assistance with personal care. You may notice that the person starts to:
- Wear the same unkempt clothes day after day
- Forget to brush their teeth
- Give up caring about their general appearance. Stop shaving or using make-up, etc.
- Avoid or forget to bath regularly
- Forget or doesn’t bother to change the bedsheets
- Neglect to put the rubbish out or do the washing up
There may be various reasons for this, including forgetfulness, feeling insecure getting in and out of the bath, being unable to remember which tap produces hot water, lacking motivation or feeling depressed.
Establishing routines, using prompt labels, putting aids such as grab bars and raised toilet seats in the bathroom, labelling taps, etc., and encouraging the person to accept help. All of this needs to be introduced while respecting the person’s dignity and privacy.
Observe and talk to the person about their personal care preferences. What are their difficulties, rituals, habits, routines and wishes for the future? What are their favourite scents and lotions? Are they very modest? Do they have joint pain? Do they use talcum powder after a bath? Pay attention to this type of detail.
Keeping to their personal care habits and routines will not only provide comfort but help avoid difficulties at a later stage. When the dementia progresses it will be too late to obtain essential information. Also, learn as much as you can about the type of dementia and how it may affect the person – everyone is different.
Encourage the person to do as much for themselves as their abilities safely allow. They may forget to take a shower or bath but might be able to do so independently once you help to get them started by preparing the bathroom.
Make sure they have everything they need to hand and, if necessary, help them into the bath and then withdraw. Respect their privacy and dignity by keeping them covered with a towel or dressing gown until the last minute and have these to hand when they are ready to get out of the bath. Establishing a routine of keeping dirty clothes separate from clean may help the person continue dressing independently for longer.
Middle stage dementia
As the person moves into the middle stage there is an increasing loss in abilities. This might include:
- Feeling loss of control and becoming frustrated because of loss of abilities
- Forgetting how to use personal care items, such as a toothbrush or a hairbrush
- Having perceptual problems, such as thinking the water is deep and they will drown in it or that a dark coloured bathmat is a hole into which they will fall
- Feeling embarrassed, humiliated or ashamed if incontinence occurs
- Not understanding being helped to undress or dress, or you being present in the bathroom or toilet area with them
- Not knowing how to bath, test the water for temperature or that they need to undress before bathing
Much of the information you have learned in the early stages will be very useful now as the help required increases.
Stick as close as possible to the established routines and habits. Prepare the bath and bathroom first. Run the water and test it is at the correct temperature. Boilers these days can be set to ensure the temperature of hot water never exceeds a safe level. Make sure the room is warm and you have towels and bathrobes, etc. to hand. Playing relaxing music might create a calming effect.
It may become dangerous to leave the person alone. Avoid having any toxic materials in the bathroom or toilet such as cleaning substances, shampoos or medications. Lock these away in a cupboard when not being used. The person may not be able to understand the labels and try to drink or take them when you are not watching or your back is turned.
Later stage dementia
Individuals may progress towards needing help with all aspects of care – personal care, bathing, toileting and other daily activities. It is well worth considering getting outside help. It may become too demanding and draining to continue coping on your own.
Accepting help is not a sign of weakness – you are merely acknowledging that others can give your loved one better care. Many people will be more prepared to accept personal care help from a Care Worker, especially someone in a carer’s uniform. My mother was uncomfortable with and rejected intimate personal care from family members, but readily accepted help with all aspects of bathing, toileting, etc. from a Care Worker.
Some general tips
- Patience and calmness wins the day. Explain in easy steps and/or demonstrate what you want the person to do. They may be holding a toothbrush but not know what to do with it. Miming cleaning your teeth may be all that is needed to start the process. Explain anything you are going to do, step by step. Do not rush the person – if you become anxious so will your loved one.
- Maintain a sense of humour. Learn to laugh together about accidents that occur.
- Be safety conscious. Remove locks from bathrooms and toilets or have keys handy so the person can’t lock themselves in. Don’t use bath oils – they make the bath slippery. Ensure good lighting so the person can see clearly. Remove or cover mirrors to avoid them thinking there is more than one person assisting them. A strip of coloured tape on the top of the bath sides will help them recognise it. Make sure all electrical, sharp objects and harmful substances are locked away. It is helpful to get advice from an occupational therapist who will advise you on the most suitable types of equipment such as grab bars, shower chairs, etc. A health visitor or continence adviser can help with pads, plastic or PVC covers to protect beds, and types of special underwear to use for incontinence problems and how to dispose of it.
- Respect privacy and modesty. If the person needs help bathing put a towel over their shoulders and lap. They will feel less exposed. You can then use a sponge or washcloth to clean under the towel. Distract the person by talking about something else – a TV programme, something you are going to do together later or news about someone they know. Encourage the person to do as much as possible themselves by coaching them ‘Here is the soap, wash your arm’ and so on.
- Getting help. If you are finding it difficult to cope with issues around general hygiene, washing or toileting contact your local authority, a local carers’ organisation, or call the Carers’ Direct helpline on 0300123 1053 to talk about what options are available to you. Your GP will advise on NHS services which can help. Social services can provide adaptions for the home. Some local authorities also provide laundry services.
- Be mindful of your own safety. If your loved one has mobility problems and requires help getting out of bed, into the bath and in and out of chairs, make as much use as possible of mechanical and other aids. Consult professionals who will help you obtain them. Also ask your doctor, health visitor or occupational therapist to give you some training in how to do these tasks without injuring yourself. Some care centres may also provide training courses in moving and handling. First aid manuals, often available from libraries, frequently have illustrated guidance.
None of this is easy and it can be extremely frustrating when things don’t go as hoped. Professionals, relatives or your loved one may not always react as you expect. Give yourself permission to make mistakes; have good days and bad days.
Learn to forgive yourself for feeling angry, resentful or having shameful thoughts at times. You are doing the best you can. And maintain that sense of humour! It will often save the day.
This article was written for Carewatch by Robin Dynes. Robin also wrote our Activity guides for people with dementia to help carers enrich the lives of those they support.
Robin has worked in the National Health Service, Social Services and Adult Education for over 30 years as a counsellor and trainer. His main role has been to develop innovative services to meet the needs of older people and others who are vulnerable.