Letting go without giving up: Communication

Communicating with your relative and communication between care home staff and relatives and friends

Communicating with the person with dementia

Only 7% of communication is via the spoken word. The remaining 93% is non-verbal, so even if the person can no longer speak, this still leaves quite a lot to work with. As the dementia worsens, the person will have increasing difficulty in understanding what is said or what is going on around them. They may gradually lose their speech, or repeat a few words or cry out from time to time.

Ten things to do to improve communication

1. Believe that communication with the person is possible
2. Try to focus on the nonverbal signs as well as what is said
3. Avoid making assumptions: check things out with the person
4. Make your communication a two way process that engages the person with dementia
5. Avoid the use of jargon or complicated explanation. Keep your conversation as simple as possible without being patronising or sounding childish
6. Do not ask questions which have 'why' in them. The person with dementia may find the reasoning involved in giving an answer difficult and become annoyed with themselves
7. Be a good listener. Give the person your full attention and resist the temptation to finish their sentences and talk at the person
8. Talk at a slower pace so that the person has an opportunity to grasp what is being said
9. Maintain a calm and unhurried approach
10. Discover the best time of day to spend time talking with the person

Having focused on how we can improve our communication, there is also a need to acknowledge that the living environment can play a part in helping communication. A quiet area where carers and residents can sit together away from the distraction of other people and the television can be more conducive to good communication. Visitors may prefer to go to the person's room rather than sit in communal areas.

Where the person can no longer communicate verbally, consider using other methods.

One way to let the person with dementia know that you care and that they are not alone is through touch. You could simply take hold of their hand gently without saying anything or gently put your arm around their shoulders. The physical contact might provide reassurance. Listening to music together or using items in resource boxes involving scent or texture can all give a sense of togetherness even if no words are exchanged.

Some relatives get upset when they see the person showing affection towards care staff but it should be seen as the person communicating in the best way they can. If the person is happy with the care staff that is a good reflection on the care being given and the family should be comforted by that thought.

Communication with staff

Sometimes the most innocent remark can be misinterpreted and cause considerable upset. Sometimes staff can answer a relative's question in a way that they think will be the least upsetting – with the opposite effect.

For example, if one of the reasons you decided to place your family member in a care home was that you could no longer cope with his or her challenging behaviour, it will not necessarily help you to hear that he or she is "no bother" or "no trouble at all". A statement like that is likely to make you feel guilty or that you have somehow let the person down. The staff may have been facing the same problems but just do not want to worry you.

Relatives and staff need to know what their respective roles are in the care of the person with dementia. It is not a criticism of staff that you want to carry on doing things for your family member – it is a way of you feeling involved and of maintaining your connection with the person.

Sometimes relatives ask the person in charge of the home if it is all right for them to get involved in a particular way. This agreement needs to be passed on to all the staff involved.

Some carers may live too far away to visit regularly but can still be kept informed by telephone or in writing about how their relative is getting on. As well as regular news, there may be special situations which relatives need to be told about such as changes in the person's health or changes to their medication. Some homes make a point of telling relatives about medical appointments to give them a chance to attend with the person.

Keeping relatives informed can be haphazard if there are not proper mechanisms in place to do so. A key worker or named nurse can be the main point of contact for relatives but there needs to be a back-up mechanism for occasions when that worker is not on shift.

Make sure you know and are told about:

• who the key worker is for the person
• what the doctor said if called
• any reviews of how the person is doing
• how you should approach care staff if your relative is dissatisfied but afraid to complain?

Some care homes keep a communication book in a resident's room where relatives and other visitors can pass on information and raise queries. Some carers may want to have a visitors book so they can see who has been to visit their relative, who might otherwise forget or be unable to explain who has visited. Staff can also get involved in filling in pieces of news and information about what the resident has been doing since the previous visit.

Some home managers say their door is always open to relatives and other visitors. Even if this is the case, relatives may prefer to make a set appointment to ensure that sufficient time is set aside for the meeting.

Other sources of information and support

Some homes set up meetings for relatives where pieces of news about the home can be passed on and to allow questions to be asked; meetings can also include talks from invited speakers as well as a chance for relatives to get together to discuss issues collectively.

Newsletters and notice boards are other communication methods which could be used.

The staff at the home were always very pro-active in telling me about any problems Mum had and what they had done about them. I think it's important to share information. I also tried to make sure that I told the staff about any changes I noticed in Mum or any concerns I had as soon as possible.
- Daughter

Complaints

Each care home will have a complaints policy and procedure which should be explained to relatives and residents but often a problem can be dealt with informally before it reaches the stage of a formal complaint.

Frequently, the problem lies with the first person that the complaint goes to – the simplest thing can get blown out of all proportion just because it was handled badly in the first instance by a member of staff reacting defensively. A situation can be defused and the relative's anger deflected by the willingness of the staff member to listen and investigate.

I wasn't here when that happened but let's look at what's recorded

Letting go without giving up: continuing to care for the person with dementia