There are some 850,000 people with dementia in the UK, with numbers predicted to rise to over one million in 2025 and two million by 2050—and for every patient with dementia, it’s important to realise that behind them is a grieving family caring for their loved ones.
While the care-giving journey can be rewarding, it’s certain that it can be an overwhelming challenge. Educating yourself about dementia and doing your best to maintain a positive but realistic attitude allows you an element of control as a care-giver. It can take the sting out of surprising challenges, while also improving the care you provide.
See Also: Coping with Dementia
The course dementia takes can vary widely from person to person, influenced by factors like age and type of disease, but it generally follows a three-stage pattern.
When dementia is first noticed, it’s typically in the early stages, when it can be classed as mild dementia. In this stage, patients may have difficulty remembering words and names, learning and remembering new information, and planning and managing complicated activities such as driving. They may also be experiencing sadness, anxiety, loss of interest in activities and other symptoms of major depression.
In moderate dementia, judgement, physical function and sensory processing are typically affected. This can cause problems with personal hygiene, inappropriate language and wandering.
As a patient moves from mild to moderate dementia, some home modifications are often needed. These may include removal of throw rugs, installation of locks and safety latches, the addition of a commode in the bedroom and the fitting of utility safety cutoffs such as SGN’s free gas cooker locking valve (sgn.co.uk/LCV).
The final stage is severe dementia, where the patient suffers from extensive memory loss, limited or no mobility, and possibly physical difficulties in swallowing and bowel and bladder control. At this stage, there may be need for around-the-clock care.
Support for caregivers
You may not think of yourself as a carer, particularly if the person with dementia is a partner, parent or close friend—it can be easy to diminish in your mind the actual amount of work you’re doing, since it’s for a loved one. But both you and the person with dementia will need support to cope with the symptoms and changes in behaviour.
The first thing to do is make sure you’re registered as a carer with your GP. After that, you can get a carer’s assessment—a free assessment available to anyone over 18 that will recommend and connect you to services that will make your life easier.
Carer’s Allowance, amounting to £64.60 a week, is the main state benefit for carers, and is available anyone who provides more than 35 hours a week. Other benefits include Carer’s Credit, where a National Insurance contribution is made for you to help make sure you don’t lose out on social security benefits because of gaps in your NI record. To understand the full range of benefits you may be entitled to, visit the NHS website.
Carers’ assessments often suggest:
• Someone to take over caring so you can take a break.
• Gym memberships and exercise classes to relieve stress.
• Help with taxi fares
• Help with gardening and housework.
• Putting you in touch with local support groups.
• Advice about benefits for carers.
• As a carer, you may be entitled to state benefits to help with costs.
Care starts with compassion and empathy. For example, people with dementia are prone to becoming confused about their whereabouts and even the time period in which they are living.
Trying your best to meet your loved one with dementia in the now is healthy for both parties. Remember that patients with dementia can remember emotions even after they forget the event that caused those emotions.
There are some hopes that treatments to detect and delay Alzheimer’s will spring from current research.
Dr Emer MacSweeney, CEO and Consultant Neuroradiologist at Re:Cognition says: “With the introduction of new biomarkers to detect evidence of Alzheimer’s disease at its earliest stage, there is reason for cautious optimism that new generation medications will delay progression of disease and also boost cognition. Just as research through clinical studies has improved our outlook for numerous diseases such as certain forms of cancer; the same action is being taken today for Alzheimer’s disease. With every study conducted we understand more about the disease and become closer to finding treatments, and ultimately a cure.”
See Also: Preventing Dementia
This feature was originally published in the winter edition of Live to 100 with Dr Hilary Jones, which you can read here