What to do after dementia diagnosis

Following any medical diagnosis, you will have a myriad of thoughts running through your head.  These will range from feelings such as shock, anger and worry for the future, to more practical considerations such as sorting out your money and letting people know what you want for the future.

Whilst both are equally important, this paper will focus on some of the more practical elements.

Do you have somebody you can talk to?

It is important to have a somebody that you can be open and honest with about how you feel and what is going through your mind. It can be one of your closest family members or friends or a stranger, whichever is best for you.

If you have nobody close who fits the bill, there are plenty of support groups around that would be delighted to welcome you in.

Who must I tell?

If you are still driving you must tell the DVLA and your car insurer. It does not automatically mean you have to stop driving but you must tell them. If you are still working, your employer may be a great source of support and may be in a position to help you with reasonable changes to your working environment or role which may mean you can continue to work for longer.

What are you entitled to?

Being diagnosed with dementia may mean you are now able to access some much needed support. This may mean you are entitled to free equipment which allows you to adapt your home to make life easier or safer. You may get some free care depending on your financial situation, or social services may make adaptations to your house to allow you to remain independent for longer.

In many cases, an early diagnosis will mean you may not yet be entitled to any of this support, but it will allow you to better understand what you may be entitled to later, allowing you to plan better for the future and stay in control. Your GP or local social services should be able to signpost you in the right direction.

Have you got an up-to-date will?

We should all have a will, irrespective of any diagnosis of dementia or other condition. Having said that, a diagnosis is an opportunity to get one if you don’t have one, or check your existing one still reflects your current wishes.

It is estimated that 30% of people over the age of 50 have a will that no longer reflects their current life and wishes, with ex-partners still the main beneficiary or current partners or children not even considered.

Check your will now, and if it does not say what you want it to say, change it immediately whilst you still have capacity. This is one of the things your family may not want to discuss with you for obvious reasons, so it may be down to you to get it done. You can find a solicitor on Google or to speak to one that focuses on elderly law visit this website Solicitors for the Elderly.

Get your affairs in order

None of us have a crystal ball and none of us know what is round the corner, but people often live really well for many years after a dementia diagnosis. So the effort to organise all of your personal, legal and financial affairs is well worth it.

You may have a system that has served you well all your life but it may not be as effective when your dementia journey progresses, or when someone unfamiliar with the way you do things tries to help.

Keep it simple, buy a filing cabinet or set of folders, keep everything in the same place and label it all really well. This will allow you to control your own affairs for longer, allow a trusted advocate to help you with something specific without having access to everything, and also if someone has to take over all of your affairs they are able to do so as easily as possible.

Appoint a power of attorney

Even if you don’t have a diagnosis of dementia you should have a plan to cover “what if.”  If you are living with dementia, it is likely that at some stage you will lose the capacity to make all decisions on your own behalf. At this point, you want a nominated trusted person to step in and make decisions for you in line with what you would have done for yourself if you had retained capacity.

If you do this when you are able to make your own decisions it is a reasonably quick and cheap process starting with a quick call and subsequent visit to a solicitors. Again, if you don’t have a family solicitor already, you should find one on google or by visiting this website Solicitors for the Elderly.

If you don’t do it in time, and your family have to do it on your behalf when you can no longer consent, it becomes a very long, drawn out and costly legal process.

Make an advanced decision or a living will

This is not the same as last will and testament. This is a legally binding arrangement that dictates how future medical procedures and treatments should be managed in the future. An advanced decision, (often referred to as a living will), allows you to refuse procedures or treatments further down the line.

Consider advanced statement

This is similar to a living will but deals with how you wish to manage other elements of your health in the future. An advanced statement is a way to legally express your wishes about the way you should be cared for in the future. This can include spiritual or religious elements of your life, or whether you would prefer to move into a care home or stay in your own home.

Are you getting all the benefits you are entitled to?

Even people who work in care can be confused by entitlement to benefits, so for those uninitiated it can be a real challenge to know what you are entitled to.  There are plenty of blogs and websites that cover this as well as organizations that specialize in these areas.

For more information or if you wish to discuss care for your loved one please email care@greensleeves.org.uk