What is dementia?
In order for us to understand how to help someone with dementia, we firstly need to understand what dementia is. Dementia is caused by damage to the brain and is categorized by a decline in memory, problem solving, language and ability to participate in day to day activities. No one person experiences the exact same symptoms, this is because different areas of the brain are affected.
There are different type’s of dementia, the most common being Alzheimer’s disease however other types include vascular dementia, lewy bodies, frontotemporal dementia. It is important to remember that dementia is progressive and behavior's of a loved one may change as the pathways between brain cells become damaged or disappear.
How may someone with dementia behave?
Dementia can present in many different ways and can progress at different rates. At the beginning stages of dementia, your loved one may try to hide their behaviours and can often feel a mixture of embarrassment and anxiety over what is happening to them. They do however, engage in everyday activities as normal. As the dementia progresses, it can become more and more difficult to cover up. Short term memory is affected first and often the person with dementia will live out their life in a previous decade. This can lead to a lack of understanding of modern life, including confusion over current language, value of money, relationships and the local environment. All these behaviours can be very distressing to family and friends who may no longer feel they are familiar with this person resulting in feelings of loss.
As the brain deteriorates, completing day to day tasks becomes very difficult. Routine tasks such as washing and dressing, making food and drink, using the toilet and eating can become too challenging for your loved one to complete alone. In addition to these difficulties, some people with dementia can experience more challenging behaviours, such as aggression, frustration, wandering and refusal to accept support. This is when a decision will need to be made by family as to what care would be more beneficial for their loved one.
Caring for someone can be very rewarding, however, it can seem very daunting particularly if that person presents with challenging behaviour. It is important to remember there is support out there for family and friends who are caring for a loved one, which is specially aimed at the unique challenges that can present with looking after someone with dementia.
As a carer, it is important to remember you are only one person, you may have other priorities in your life like looking after your children, going to work, walking the dog. Feelings of guilt are very common in the sense you are doing all you can, but you still question, ‘is it enough?’. It is important to recognise that you are doing a great job and that the demands and stresses of caring for someone with dementia should not be taken lightly. It is just as essential to look after yourself as a carer as it is to look after your loved one. If you are beginning to feel overwhelmed then it is important to seek the right support.
Support for carers
There are many support networks out there which focus specifically on carer support or through providing physical support.
- The Alzheimer’s Society, Dementia UK and Carers UK all organise carers groups which provide a place to meet those who are in the same situation.
- If attending a carer group is too difficult, then online forums offer easy access to other carers to share advice and support. Forums include Carers UK forum, Alzheimers society talking point forum.
- Admiral nurse dementia helpline offers a free service to talk to a registered dementia nurse. Contact on 0800 888 6678. The helpline is open 9am-9pm weekdays and 9am-5pm at weekends.
- Dementia cafe's, such as those hosted by the Alzheimers society UK offer a supportive place for both carers and those with dementia to meet others. Trained staff are also present to offer advice and support.
- Your GP is a good point of contact to discuss any concerns or difficulties you are having, they will be able to link you in with local health professionals, counsellors as well as local services which specialise in dementia care.
- Day center’s offer some respite for carers as well as provided your loved one with a social environment to experiences stimulating activities. Age UK have day center's across the UK, a referral can be self made or completed by the GP. They offer day centers specifically for those with a diagnosis of dementia.
In addition the Alzheimer’s society offer a useful search tool to identify services in the local area
- Respite care is a care arrangement designed to offer some temporary relief for unpaid carers. This care is arranged via the local authority and would involve an assessment of your loved one’s needs or the carer’s needs. Your GP can request this for you by making a referral to the local authority or you can contact them directly.
- In order to help a loved one to stay at home for a longer period of time, aids and adaptations to the home can be made to increase independence as well as helping to reduce strain and anxieties on the carers by making the home safer. Adaptations can help improve independence with getting on and off the toilet, in and out of the bath, on and off the bed as well as aids to help improve safety such as cooker switches or door alarms.
An occupational therapist can advise on what aids and adaptations are needed at home, they can be accessed privately or though social services. You can contact your local social services via your GP or directly for an assessment.
Assessment for care
If you feel you need help with caring for your loved one at home you can either organise private care or apply for an assessment from your local council. They will then complete an assessment over the phone or face to face.
They will need to assess your loved one’s current needs to ascertain how much care is required. It is important to be honest about what support they need and provide as much details as possible as to what they can and cannot do for themselves.
Once the assessment is completed they will then advise as to what care and support they would recommend, this may include day centers, meals on wheels, regular carer visits etc.
Payment for care
Care is means tested. You will generally have to pay some money towards the care however this will be based on the financial assessment.