Did you know that there are currently up to 1 million people living with dementia in the UK? More than half of these people need help from a registered carer. More often than not, this carer will be a close family member. Although it is incredible to have relatives looking after dementia patients, it can be incredibly difficult.
The level of care needed for those with dementia is high, with many needing constant monitoring. The condition can make patients feel confused, upset, frightened, angry and aggressive. This wide range of emotions can take its toll on both the patient and the carer (especially if the carer is a loved one).
In this guide we are looking into how families are involved, how this impacts them and the wide support available.
According to NHS England, around 1 in 3 of us will care for someone with dementia within their lifetime. There are over 540,000 registered dementia carers for dementia patients in the UK, many of which are relatives. In the current economic climate, more and more people consider looking after relatives themselves.
It has also been reported that 66,000 of these caring relatives have had to reduce their working hours to accommodate their loved ones. A further 50,000 have had to leave their job entirely. The cost of dementia on the economy, and on families, is growing rapidly.
Money is a difficult subject among many families, but it’s especially difficult when dealing with a loved one with dementia. It’s important to have these discussions early on, before the condition worsens and decisions become more difficult. This starts with things like paying the bills and looking after important documents.
However, there will come a time where you need to start talking about more delicate subjects. You need to ensure your loved one has a will in place that covers as much as possible. Funeral arrangements may also be part of conversation.
It’s encouraged that the patient sets up a Lasting Power of Attorney (LPA) so that someone can make decisions on their behalf. If they are already unable to do this, then you can apply to the Court of Protection to appoint a deputy.
This, among other things, can cause friction. This is especially true if you’re an unpaid carer. Depending on your family dynamic, it may take time to decide who will and won’t be responsible for certain things. You may also have disagreements on where and when money is spent.
Did you know that 80% of dementia carers find it hard to talk about the emotional impact it has on them? That’s an awful lot of people suffering in silence, especially when you consider 9 in 10 experience anxiety or stress several times a week.
A staggering 60% of carers admit to feeling guilty when asking for help. You may believe that bottling up emotions is the right thing to do, but it can have devastating consequences down the line.
All of this can lead to your own personal medical issues. You may have difficulties sleeping, resting or taking regular breaks. This could then lead in a decline in mental health, which may be unintentionally further strained by the patient.
We’ve already covered some instances where dementia carers see a negative impact on relationships with family members, but it’s more than that. If you are providing round the clock care (40% of carers do), it may strain personal relationships. Friends may feel distanced from you and partners may confront you about how much time you spend away from them.
This, coupled with the guilt you may feel, could leave you feeling like you’re stuck between a rock and a hard place. If you spend time with friends, you may feel like you have abandoned the patient. If you spend time with the patient, you may then feel like your friends won’t understand and will become frustrated with you.
You must learn how to comfortably do both in a way that is beneficial for all parties, but especially your own. The selfless deserve to be a little selfish every now and again.
You may feel stuck, lost or in over your head, but there are many forms of support you can benefit from as a dementia carer. These benefits are there specifically to help people like you. They are there to help give you an opportunity to share, to find like-minded people and to give you some respite.
The HNS offers a carer’s assessment service, where they can give you personalised recommendations to help make day-to-day life as a carer a little easier. They may offer you training or put you in touch with local support groups. They may also offer you the chance to take a break from caring or offer help with housework or shopping.
There are a wide range of support groups up and down the country for people just like you. There are also local charities such as Age UK, Dementia UK and Carers UK who offer free helplines. Additionally, you can visit local memory cafes where there are often professional carers on hand to chat in complete confidence.
There are a range of online forums available, such as those from Carers UK and Alzheimer’s Society. There is also a plethora of helpful articles, guides and videos across the web. Some also find social media a great way to find others and to share useful information.
If you have reached the point where you really do need to stop, you can always take a short break. Local councils may offer a sitting or “befriending” service you can take advantage of. You may also be able to use a local day centre in order to give yourself some breathing space.
If you need a slightly more extended break, you may also ask the NHS for help with respite care (also known as replacement care) in England, Wales or Northern Ireland. They can offer to support you by looking after your loved one for anywhere between a few days or several weeks.
When it all gets too much, and you want or need a more permanent solution, you can reach out to Cavendish Homecare. We offer person-centred live-in dementia care in London and the home counties. We also offer respite care to those who need and truly deserve it.
We are one of the leading providers of dementia care and offer personalised plans for every patient. At Cavendish Homecare, we work closely with dementia organisations to ensure families are involved in every decision. If you would like to learn more about our services please do not hesitate to get in touch.