As her main carer throughout her mother’s final years, Emma Woods understands the challenges of going to the doctor with someone who has dementia.
For you, it’s a routine appointment. For the patient, it may be the culmination of weeks or months of rising desperation and confusion.
Washing, toileting and dressing my mother was never in my life plan, but faced with dementia I had an overwhelming desire to protect her. Somewhere along this road we swapped roles, something I realised when I heard myself say to a nurse ‘I’m her mother’. These changes did not show outwardly but they were shattering on the inside and the effects lasted long after my mother had died.
Following my own experiences, here are my top tips on how to get the most out of a consultation between someone with dementia and their family carer.
- Remember that if the carer makes the appointment, they will have had to confront other issues. They may fear losing their loved one or find it difficult to broach the subject of memory loss.
- A carer may choose to come alone – listen, pay close attention and take them seriously. Prolonged anxiety may manifest itself as anger as the number of hurdles we must leap increase daily.
- The person with dementia may be in denial or truly believe that nothing has changed. Therefore, try to invite the family carer to all appointments – only the full picture will allow you to diagnose and medicate effectively. For example, my mother remained plausible, charming and unaware that, without me, medication would not be taken, washing not done and meals uncooked, even though she realised that her memory was not good.
- Listen carefully to what the carer says and to what goes unsaid, but is hinted at to protect a loved one’s self-esteem. Make eye contact with and talk to both the person with dementia and the carer. At all stages of the condition, the carer can help you build a fuller picture of the individual’s condition and lived experience. So don’t leave us in the waiting room!
- Find time to ask the carer: ‘How are you? Are you coping?’ Sleep deprivation in the later stages is devastating. The sense of loss the carer feels is a living grief – loss of a companion, loss of a shared past, loss of the future, loss of control, loss of the ability to plan day-to-day and in many cases loss of friends too. The person diagnosed with dementia is losing themselves, but so is the carer
- Be humble. Realise that the carer may know more than you do about their loved one’s dementia. They may look to you for support, confirmation, direction, understanding, compassion and to tease out puzzling symptoms.
- Slow down. What we need is your time.
Emma Wood is a volunteer working with Alzheimer Scotland’s National Dementia Carers Action Network (NDCAN). NDCAN is a national campaigning and awareness raising group whose members all have experience of caring for someone with dementia.
Care for older patients is an increasing priority for many doctors. We’ve worked with partners including the British Geriatrics Society and Age UK to understand where particular challenges exist and how we can help doctors tackle these. We’ve developed a collection of guidance, tools, signpost and more to support this.
Find out more at Better care for older people.