There are currently approx 800,000 people with dementia in the UK.
Over 17,000 are younger people with dementia and there will be over a million people with dementia in the UK by 2021.
Two thirds of people with dementia are women. One third of people over 96 have dementia.
60,000 deaths a year are directly attributable to dementia.
The final cost of dementia to the UK will be over £23 billion in 2012.
There are 670,000 carers of people with dementia in the UK
Carers of people with dementia save the UK over £8 billion a year.
Identify
Do you identify on the patient’s records that they have dementia; this will often help when the carer is making an appointment on their behalf.
If the carer is a patient at your Practice do you identify them as a carer? Often carers have medical conditions related to being a carer.
- Back problems due to lifting the patient.
- Depression. Often due to isolation.
- Not sleeping due to caring for the patient.
- Other medical conditions
If medical issues are not identified it can often lead to the carer becoming unwell and the patient having to go into hospital or a nursing home.
Carers save the NHS a lot of money caring for people in their own home. Carers need the support to help them continue caring for their loved ones at home.
Yearly flu vaccinations are vital, if the carer has a bad attack of the flu the cared for person will often have to go into respite care.
Appointments
If a carer telephones for an appointment always try and accommodate them in a time or day that is suitable for them.
Carers will often accompany the person with dementia to the GP. The carer can often describe the symptoms or problems to the GP or Nurse. The carer can often remember afterwards what was said and provide the appropriate support.
Confidentiality
Sometimes people with dementia prefers to see their GP alone, or it may not be possible for anyone to go with them. If this is the case a family member may wish to talk to the GP afterwards. When a carer or relative contacts a GP with concerns about a person, the GP may decline discussion on the ground of breaking patient confidentiality.
The General Medical Council (GMC) has issued guidance on this matter (confidentiality 2009) The guidance states that doctors should listen to the concerns of carers, relatives, friends or neighbours because they may have valuable information that can help the patient. The GP should make it clear they may tell the patient about the conversation.
Respecting Cultural Values
Some patients might have cultural or religious background. If so it is important if these are identified that everyone at the Practice acts accordingly. These may include:
- Religious observances, such as prayer and festivals
- Touch or gestures that are considered disrespectful
- Ways of undressing
- Ways of dressing the hair
- How the patient washes or uses the toilet
The person with dementia might not be able to explain about their culture so it is important that the carer informs the Receptionist or the Doctor before the appointment.
Training for Receptionists
It is important that your Receptionists are not only aware of patient needs but the needs of carers too.
By understanding any illness or disability it can often help when dealing with patients and their carers over the phone or at the front desk.
There are lots of organisations dealing with dementia that would be more than willing to come and talk to your receptionists and give them some insight into the life of someone suffering with dementia and that of the carer too.
Here are so do’s and don’ts of communication that might be useful for Receptionists.
Do
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Don’t
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Talk to the person in a tone of voice that conveys respect and dignity.
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Talk to the person in “baby talk” or as if you were talking to a child.
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Smile – this will help relax the person.
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Don’t argue – the demented brain tells the person they can’t be wrong
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Maintain eye contact by positioning yourself at the person’s eye level. Look directly at the person and ensure you speak clearly.
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Glare at the person you are talking to. Always use good body language.
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Use visual cues whenever possible.
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Begin a task without explaining who you are or what you area about to do.
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Be realistic in expectations.
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Talk to the person without eye contact, such as while typing on the computer.
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Observe and attempt to interpret the person’s non verbal communication.
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Try and compete with a distracting environment; Loud noises, other people talking at the same time.
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Use positive body language and a reassuring tone of voice.
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Provoke a reaction through unrealistic expectations or by asking the person to do more than one task at a time.
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Speak slowly and clearly
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Disregard talk that may seem to be “rambling”
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Encourage talk about things that they are familiar with
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Shout or talk too fast.
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Be kind – treat them, as you would want your family to be treated.
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Interrupt unless it cannot be helped.
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Keep your explanations short. Use clear and flexible language.
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Invade their personal space if they are showing signs of fear or aggression.
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Invade their personal space if they are showing signs of fear or aggression.
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Use complicated words or phrases and long sentences.
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Carers
Does your practice have a Carers Group? Such groups have proved to work extremely well in many surgeries.
I formed a Carers Group at my Surgery and the group would meet every 3 months, at lunchtime. Carers that were caring for people with all disabilities would come along for 2 hours to sit and chat. We would have different organisations attending the meetings on subjects that would help the carers in many different ways. We would have someone in from Social Services to talk about their entitlements. Someone in from Help and Care would come and help out, the local Fire Officer would come in and talk about safety in the home, and we would often have local businesses coming in to show support in many different ways.
But the most important part of these Carers Meetings were that the Carers had someone to talk to, people who understood what they were going through. Friendships were formed and often problems halved.
And finally……….
Each person with dementia is an individual with their own experiences of life, their own needs and feelings, their own likes and dislikes.
Dementia affects each person in a different way.
We all needs to feel valued and respected and it is important for a person with dementia to feel that they are still valued.
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