Expert advice on how to cope when caring for a person with dementia, and why it’s so important for carers to take time out, courtesy of Admiral Nurse Rikki Lorenti
Rikki Lorenti is an Admiral Nurse with over 30 years of experience in mental health care who works for SweetTree Home Care Services (www.sweettree.co.uk). He provides psychological support and advice, with the aim of helping families to cope with the challenges of living with dementia.
Here, he talks about his experience and suggests how to cope with being a carer and what support is available for both carer and the person with dementia…
Where did Admiral Nurses come from?
Admiral Nurses were developed in the late Eighties, as a response to one family’s experience of supporting their father who was diagnosed with vascular dementia. He was an Admiral, and his name was Joe Levy. Admiral Nurses can provide support, guidance and knowledge at any time post diagnosis, but the best time is within weeks of getting that diagnosis. An Admiral Nurse is able to listen to family concerns and issues, provide emotional support (listen), practical support (educate/implement strategies for caring) and consider signposting (provide a link between family and services).
What sort of training and background do you have?
Admiral Nurses are RMN (Registered Mental Health Nurses), though the role is extending to RGN (General Nurses) with a formal knowledge, and experience of dementia.
Admiral Nurses are experienced health professionals, and though they generally do not prescribe, they have a working knowledge of medication and their side effects, and are in a position to raise concerns early, as well as explain to families how medication will interact and its possible benefits.
What sort of training and background do you have in dementia?
Personally, I have been nursing for 31 years in various environments, both within the NHS and the third sector. The majority of this has been in dementia, which has given me a good opportunity to observe the ever- changing approaches to dementia care. I completed my N11 (Care of the Dementia Patient), as well as the Advanced Dementia Course with DENDRON, so I feel that I do meet the criteria for formal education as well as experience.
I have always seen the situation as a set of scales, if the support is weighted towards one person (either the person diagnosed, or the informal carer) then there is a possibility that the care will fail, and this may have an impact on the relationship.
Within Admiral Nursing the needs of the carer are equal to that of the person with the diagnosis. So I would advise the need to develop strategies that reduce stress and anxiety, and that don’t increase confrontation.
Although this can be difficult in some cases (due to guilt) it’s important that the carer takes time out during the week, to do something for themselves.
This is not selfish, I see it as a need to ‘recharge the batteries’ and get away from the ‘world of dementia’. I have found carers going to education courses, spending the day in a spa or having coffee in a garden centre.
What advice do you have on coping when caring for a person with dementia?
If orientating the person with dementia is causing anxiety, go with their memories, discuss the past, talk about what you would be doing at this time of the day, and use distraction. For example bring the person into the kitchen while you are cooking a meal, as this may well reduce stress and anxiety, and maintain the person’s self-esteem and allow them to make a contribution. Consider that there may be the possibility of a sense of loss from both parties.
If communication is not good, consider writing down questions, ask questions slowly and await a response. Use audio-visual resources more, and learn to observe how facial expressions can express needs when words cannot.
Be aware that increased confusion among those with dementia is not always related to the dementia, eliminate infection that might be causing anxiety. Remember that pain can increase agitation, so observe for grimacing, constant movement in a chair and possible increase in anger and distress.
What support might be available?
Register with your local carer’s group, seek as much information from the Memory Clinic and make sure other family members are aware of the situation, so that the carer burden can be shared.
Seek advice from a Dementia Care Adviser or your local Carer’s Centre/Alzheimer’s Society regarding council tax reduction/benefits, and find somebody to talk to – possibly a carer’s support group.
If there are no Admiral Nurses in your area, consider contacting Admiral Nurse Direct on 0800 888 6678 for advice.
How do you suggest coping with challenging behaviour?
Don’t get into a confrontation, take a step back and if the environment and risk level is low, then go and do something else and come back 15 minutes later.
Remember aggression may well be related to frustration, so look to see what is causing the frustration, such as disorientation, struggling to complete a task, and if orientation increases this frustration then consider distraction, using a past memory that may reduce anxiety, in other words ‘go into the person’s world’.
If you can orientate, then consider going through the orientation in a calm way.
Do not respond in an angry or confrontational manner, sit near the person and hold on to their hand (if they agree) to suggest comfort.
If frustration or the presenting anger is rapid, consider an infection. Try and empathise with the person with dementia, as this may give you an understanding of the frustration and how it can be managed in the future.
How about coping with mood swings – such as a person being tearful one minute, happy the next?
In the early stages of dementia, when the person diagnosed has insight, there is a potential for that person to show signs of depression. Maintain normality; make life as positive as possible, while maintaining interests and hobbies. Focus on what the person can do rather than what they can’t.
If the mood becomes an issue then it may be a discussion with the GP or Memory Clinic to consider short-term medication. This can also be the case as the dementia progresses, but this should not be the first option.
Try to keep a structure and provide a calm environment. Insecurity is much more evident as the dementia progresses, as the person struggles with a combination of poor recognition, disorientation and the increasing need for reassurance.