What to do after a dementia diagnosis
Once a person receives a dementia diagnosis, there are many things that can be done straight away. These may provide immediate support or be part of future planning and we will guide you through the types of things that we recommend you consider – from financial support, legal rights and practical aspects such as changes that can be made at home, driving and the importance of support networks.
- Lasting powers of attorney (LPAs)
- Discussing future care
- Review medication
- Disability benefits
- Finding local support
- Changes at home
- Requesting a Carer’s Assessment
Lasting powers of attorney (LPAs)
First on the list is applying for Lasting Power of Attorney. If you’ve spent much time watching US legal dramas you’ll know an attorney as a solicitor or lawyer, but in the UK it just means someone appointed to act on your behalf. Once the person with dementia (the donor) grants someone Lasting Power of Attorney, this person becomes their attorney, and the attorney can make decisions for the person with dementia once they they are unable to do it themselves. This is called losing mental capacity in legal terms.
In English law you are able to apply for ordinary or lasting of powers of attorney; lasting powers of attorney are still valid (the ‘lasting’ bit) once the person loses mental capacity. Ordinary powers of attorney are only valid whilst the person has mental capacity. Scotland just has the single ‘power of attorney’, which is the same as lasting power of attorney in England.
Usually the attorney will be someone close to the person with dementia, and often the attorney will also be their carer. The attorney should be someone the person with dementia trusts, over 18 years old (16 in Scotland) and with the mental capacity to make their own decisions. The person with dementia can have more than one attorney, and they can also decide whether any decision made by attorneys should be made by one attorney on their own, or whether they all need to agree. The person with dementia can also nominate back-up attorneys, should the original attorney be unable to carry on.
There are two different types of LPA. A health and welfare LPA means the attorney can make decisions for the person with dementia on:
- daily routine, for example washing, dressing and eating
- medical care
- where the donor lives
- life-sustaining treatment
In Scotland this type of LPA is called a welfare power of attorney.
The second type of LPA is called a property and financial affairs LPA, or, in Scotland, a continuing power of attorney. It means the attorney can make decisions for the person with dementia on:
- managing a bank or building society account
- paying bills
- collecting benefits or a pension
- selling a home
This second type of LPA can’t be granted to a person who is currently bankrupt or has a Debt Relief Order.
In Scotland there is a third option, combined power of attorney, which gives the attorney both continuing (property and financial) powers and welfare powers in a single application.
Being an attorney comes with a lot of responsibility, but it doesn’t mean having total control over the person with dementia. The attorney can only make a decision on their behalf if the person with dementia is incapable of making it. The person with dementia can still make the decision if they:
- understand the information they need – for example, understand the language used or the format it’s provided in
- remember the information for long enough to make the decision
- weigh up the options and make a choice – what the consequences will be
- communicate their decision in any way – this might include using words, pictures, sign language, blinking or perhaps squeezing a hand
They may be able to make the decision at another time. People with dementia can move between being able to make decisions and not having mental capacity quite often. Attorneys can’t overrule the decision of a person with dementia just because they don’t like it or think it’s wrong. If in doubt, an attorney can ask for a doctor to assess mental capacity.
As with all legal matters, there are exceptions to the above. A person can appoint a person to act under a property and finance LPA whilst they still have mental capacity. Often this happens when a person has mental capacity, but finds the matters complicated, or overwhelming. For example, this allows the attorney to act in a dispute where the donor may not have the confidence or strength to fully progress the case through the courts.
Additionally, a donor may set limits to a welfare LPA. In this example, an attorney may have authority to make decisions on medical care, but is not allowed to decide where the person with dementia lives.
It’s important to apply for an LPA whilst the person with dementia still has the mental capacity to go through the process. Once the person with dementia loses mental capacity an LPA can’t be granted, and in a worst case scenario you may have to apply to the Court of Protection for a judge to make decisions on behalf of the person with dementia.
Discussing future care
We’ve already looked at LPAs, and one of the most important parts of the attorney’s role is making care decisions. Trying to work out what the person with dementia would want can be hard. One answer is to discuss it before the person with dementia loses mental capacity. NHS England has produced the Planning your Future Care guide which explains how to start the conversation and the options available.
It may be that the person with dementia also wants to make an Advance Decision to Refuse Treatment (ADRT). This is better known as a living will. Like a lasting power of attorney, this has to be made before the person with dementia loses mental capacity.
Drug and non-drug treatment can be more effective the earlier someone is diagnosed. Some medications have different effects on people with dementia or can prevent other drugs working as intended, so request that the GP reviews all medications in light of the dementia diagnosis.
Once the person has been diagnosed with dementia they may become eligible for additional benefits, including Attendance Allowance or Personal Independence Payment (PIP). They won’t be able to claim both; Attendance Allowance is only for those are over the state pension age, and PIP is only for those who are under it. If they’re already claiming PIP when they reach state pension age, they’ll carry on receiving PIP. The PIP is being replaced by the Adult Disability Payment (ADP) in Scotland.
Attendance Allowance isn’t means-tested, so it doesn’t matter how much money the person with dementia has or how much they’re earning. It doesn’t just have to be spent on care costs either. It’s for anyone who needs someone to help looking after them, and it’s paid at two rates. The lower rate is £61.85 each week and is for people who need ‘frequent help or constant supervision during the day, or supervision at night’. The higher rate is £92.40 each week and is for people who ‘need help or supervision throughout both day and night, or a medical professional has said you might have 6 months or less to live.’
Neither PIP or ADP are means tested. This benefit is paid in two parts: the daily living part and the mobility part. The daily living part relates to the person with dementia’s ability to do daily tasks like washing, budgeting and preparing food. Like Attendance Allowance it’s paid at a lower and a higher rate (standard and enhanced rates for ADP in Scotland) of £61.85 and £92.40, depending on the person’s needs.
The mobility part is for people who have difficulty:
- working out a route and following it
- physically moving around
- leaving their home
It’s not just for people with physical difficulties, and people with dementia can often struggle with leaving the house or following a route. Again, it’s paid at two different rates, of £24.45 and £64.50, depending on the person’s needs. Even if the person with dementia doesn’t qualify for one part of the PIP they may still be able to claim for the other. There’s no equivalent for the mobility part once the person reaches state pension age.
Finding local support
Everyone experiences dementia differently, but there are lots of experiences that all carers and people with dementia go through. We’ve found that being able to meet up and share their experiences, challenges and problems is really helpful for carers. There are voluntary groups like dementia cafes and, depending on your local authority, council run services too.
The support that carers and people with dementia can access really does depend on where you live. The Carers Trust website has a great tool that shows you the support near you:
You can also ask your local council, library, memory assessment team or your GP for information about support organisations. Experiencing dementia can be extremely lonely, both for the person with dementia and their carer. Whilst getting out and attending these groups has its own challenges, it’s often extremely rewarding and staying active has many benefits.
Changes at home
Changes at home can make life easier for carers and the person with dementia. Labelling cupboards, for instance, makes it easy for the person with dementia to know where things are. Other visitors like family members, community nurses and paid carers can find things without upsetting the person with dementia.
A lot of people with dementia develop problems with their balance. Putting in handrails, even before problems start, can help reassure them and prevent accidents. Changes to their home can upset people with dementia, so it’s best to try to make changes early on.
The University of Stirling and the Thomas Pocklington Trust have put together a good practice guide to designing homes and living spaces:
You may want to consider installing alarms if the person with dementia is living alone. There are loads of alarms on the market, ranging from personal fall detectors to ones which alert you if the front door is opened.
A person with dementia can become lost or confused about their location. This behaviour used to be called ‘wandering’, but nowadays we recognise that the person with dementia isn’t wandering, but walking with a reason. They believe they’re trying to get somewhere, even if the destination or method of travel might not make sense to others. It’s believed that 60% of people with dementia will get lost or go missing at least once. A person with dementia who goes missing can be at high risk, especially in rural areas.
The Herbert Protocol is a national initiative named after George Herbert, who sadly died after getting lost trying to reach his childhood home. It encourages carers, family and friends to put together a pack that the police can use to find the person with dementia if they get lost. It includes photos, information on medical needs, and places that are or have been significant to the person. Check with your local police force to see if they support the Herbert Protocol.
Dementia is a notifiable condition, which means someone MUST tell the DVLA if they’re diagnosed with it. They must also tell their car insurance provider. Being diagnosed with dementia doesn’t always mean the person must stop driving straight away. The Alzheimer’s Society say that one in three people with dementia still drives. However, the DVLA will usually require the person with dementia to complete an annual assessment to make sure they’re still safe.
Some people with dementia may be upset about being told not to drive. It’s a massive loss to their independence. One way to stop the loss of their car becoming a big issue is to set up a family rota for driving them around. Of course, depending on the person and their dementia, this may not work!
If the person with dementia wants to continue to drive, and the DVLA approves this, they should still consider taking a SAGE driving assessment for reassurance.
Requesting a Carer’s Assessment
Becoming a carer means your life changes, and your council has a responsibility to help you cope. If you’re a carer and aged over 18 years old you can ask for a Carer’s Assessment. The carers assessment is a chance to think about your caring role and how it affects you. There will be questions about your caring duties and how you’re doing. It’ll also ask what you might be struggling with and how it’s affecting the rest of your life. It’s really important to answer these questions honestly, as it might affect the level of support offered to you.
Some people might be worried about talking to adult social services. A Carer’s Assessment is 100% about helping you, the carer. It’s certainly not about judging your care or taking people away.
A Carer’s Assessment is free, and if you qualify for help the council will write a care and support plan explaining the help you’ll get. It could be that you don’t need anything extra at this stage, but it could also be respite support, financial help or training. You should be offered a carers assessment when the council learns you are a carer, but you can ask for a carers assessment at any time.
What else can I do?
Caring for a person with dementia is hard, and the support you get can vary between councils. But Dementia Carers Count are always here for you. Learn new ways to care for yourself and the person you’re caring for at one of our Live Online Learning sessions. Get answers any time in our Virtual Carers Centre or ask other carers who are going through the same things as you in our forum. You can also get emails from us for more support straight to your inbox.
- Join a live online learning session
- Explore the Virtual Carers Centre
- Ask other carers in the forum
- Get our emails