In this third episode in the series we ask "What do I do if…I've been diagnosed with dementia?"
Jessica Flowerdew, senior associate at Brodies is joined by Jennifer Hall, head of national support services at Alzheimer Scotland to discuss how dementia affects individuals and families across Scotland, and the support, including legal, personal and even technological, they, and their families, can receive.
From a dementia diagnosis and dealing with family dynamics, to powers of attorney and the spectrum of incapacity, Jessica and Jennifer offer a wealth of information for dementia sufferers and their families alike.
David Lee, Podcast host
David Lee hosts the 'What do I do if..? podcast. David is an experienced journalist, writer and broadcaster and he is also the host of 'The Case Files' podcast by Brodies.
00:00:02 David Lee, Host
Hello, my name is David Lee and welcome to Podcasts by Brodies. Experts from Brodies operate in many areas of the law every day, and their clients ask a very wide range of questions during their time working with the lawyers, whether they're navigating new or more familiar situations together.
In our series “what do I do if...?” Brodies experts from various fields explain how they help clients when faced with some of those different and often difficult questions.
The latest episodes feature Brodies personal and family team, and today we're looking at the question, “what do I do if... I've been diagnosed with dementia?”
Welcome to you both. Jen, if I can come to you first -
Can you give us some idea of the scale and the number of people and families touched by dementia in Scotland and across the UK?
00:01:11 Jennifer Hall, Head of national support services, Alzheimer Scotland
Dementia is very much an umbrella heading that describes a collection of neurological conditions that affects people’s brains.
Dementia is huge if we're talking about it in terms of scale. In the UK alone, that is estimated to be 944,000 people living with dementia in the UK and if we break that down into what that looks like in Scotland, there's estimated to be in excess of 95,000 people living with dementia in Scotland.
Let's break that down further.
To about 4000 of that statistic are people under the age of 65 and certainly from my experience, we have been hearing from a lot of younger people that are worried about dementia and are on that kind of journey to getting a diagnosis of dementia.
Just to kind of look at the gendered aspect of that as well. Dementia predominantly affects women.
So there's 2/3 of that statistic that are female and that are living with a diagnosis of dementia.
And sadly, in the absence of a cure, we are looking at more than a million people in the UK that will be living with dementia by 2030.
00:02:26 David Lee, Host
Very sobering statistics there and you touched a little bit on it there but dementia is very much a kind of spectrum of different conditions.
It's sometimes easy to think that dementia immediately means incapacity, but that's not really the case, is it?
00:02:43 Jennifer Hall, Head of national support services, Alzheimer Scotland
Absolutely, and the law very clearly tells us that capacity is something that should always be assumed in Scotland. So until we know otherwise, we are always assuming that human beings have capacity - particularly to make decisions that impact on their lives.
But if you have a diagnosis of dementia, that doesn't automatically equal incapacity. And if we're really adopting a supported decision making model, which we absolutely should be, because it's in line with a human rights based approach which Alzheimer Scotland adopt and apply, we want to make sure that we are assuming capacity in all cases.
But unfortunately when it comes to dementia, eventually it may be that that person is unable to weigh up their options, to make reasoned judgments and to protect their own interests.
And that's really when the law comes in to protect that person's rights and we want to be thinking about things like future planning and legal instruments that are there to allow for that to happen. So, for example, powers of attorney, guardianship, that kind of thing.
00:03:59 David Lee, Host
So you've brought us into legal aspects, so we'll bring you in here, Jessica.
If you're diagnosed with dementia, what should your first step be in terms of being an individual and the wider family?
00:04:13 Jessica Flowerdew, Senior associate, Brodies LLP
A diagnosis of dementia doesn't necessarily mean that someone unable to give you instructions is unable to make a legal act.
So as lawyers, we cannot rely on a presumption of capacity when we are taking instructions.
We have to be very certain that the person who's instructing us understands what they're doing, but we have to explore ways in which we can facilitate someone to exercise their capacity because, as Jennifer said, the law is moving very much towards that supported decision making model.
So, we have to think about the right time to speak to a client, the ways in which we can make them comfortable, the ways in which we can facilitate them to understand what it is that they're doing.
So we don't immediately assume that someone is unable to instruct us because they have got a diagnosis of dementia.
As soon as possible after you have received your diagnosis you should speak to a lawyer about what you need to do to protect yourself going forward
We don't operate a one size fits all model here at Brodies, we give bespoke advice to our clients. So, we will listen to their objectives, their concerns and we will advise accordingly. So, the advice we give to one person, won't necessarily be the same advice as we give to somebody else.
00:05:51 David Lee, Host
It must be quite challenging to figure out for someone diagnosed or their family to decide when to involve a lawyer, because every case is going to be different.
How do you how do you try and get it right in terms of advising them when it is appropriate to look to the law?
00:06:20 Jennifer Hall, Head of national support services, Alzheimer Scotland
In Scotland we have a post diagnostic support guarantee. So as a result of the first dementia strategy which came back in 2010, the Scottish Government have guaranteed and promised that anyone getting a diagnosis of dementia is entitled to a minimum of one year post diagnostic support.
Now that looks different depending on the locality, the person and where they live, but post diagnostic support is predominantly delivered by Alzheimer Scotland link workers or it might be a health professional in a health board area.
But that is a real opportunity there to start to have these conversations because post diagnostic support is about preparing the individual and their family to think about the future.
What is dementia? What does this mean for me? What might this look like going forward? What are the really important decisions that I might need to make, that I want to happen, or that absolutely don't want to happen? And that's when things like conversations about what a power of attorney is, what that allows and significant people in that person's life to take on as a responsibility, become really crucial.
So understanding what that looks like for them and the benefit for them, I think it can be a really empowering conversation to have.
I think post diagnostic support is a real opportunity there for them to be saying, at this point you might want to be thinking about instructing a lawyer to put in place these kind of tools.
00:07:50 David Lee, Host
And so, Jessica, what exactly is a power of attorney and why is it so important in this kind of context?
00:07:58 Jessica Flowerdew, Senior associate, Brodies LLP
So a power of attorney is a legal document that allows you, the grantor, to appoint a person or persons to make decisions about your property and your finances, and also your welfare.
There are two types of power of attorney in Scotland.
The power of attorney that allows you to appoint someone to make decisions about your property and finances and and the other is the power of attorney that allows you to appoint someone to make decisions about your personal health, your care, your well-being, your overall welfare.
We can prepare them as individual documents or as one combined document, known as a combined continuing and welfare power of attorney.
They are vital for everyone, not just for people who have received a diagnosis of dementia.
We recommend that everyone puts a power of attorney in place to futureproof and to protect themselves in the event of a sudden loss of incapacity, for example, or a temporary loss of capacity.
They can be useful in many circumstances. They can be useful for people who still have capacity.
So a continuing power of attorney, which is a financial and property power of attorney, is called a continuing power of attorney because it can be used straight away so it can be used as soon as it's been signed and registered with the office of the Public Guardian, which is a requirement for all powers of attorney.
And that's practically really useful. There are people who maybe just initially received a diagnosis of dementia, they've still got capacity, but they're perhaps physically and less able than they were or they're a bit nervous about dealing with things that were otherwise really normal and everyday for them, it’s a frightening time and they might be nervous about using the phone, they might be nervous about going to the bank.
A power of attorney can be a really useful document to allow a member of their family, a friend or relative to start help supporting them. It thereafter continues to be affective, hence its name, it continues to be effective after that person has lost capacity.
So a financial power of attorney isn't just for people who don't have capacity it can be really useful before then.
A welfare power of attorney is different. That can only ever be used when the grantor has lost capacity to make their own welfare decisions.
And that's another thing that is really important for people to understand about powers of attorney. One of the concerns that people have about putting that in place is that they're somehow relinquishing control. They're handing over such a a considerable power to somebody else.
And that's true, you need to be very comfortable about who you're appointing you. You need to know that that's a person that you can trust, someone who will make the right decisions. Someone who will take your personal views into consideration when acting on your behalf.
But while you retain capacity, you always hold a trump card. So, you're in control and you will make your own decisions and be responsible for your own decisions.
And capacity is fact and decision specific. So you might have lost capacity to do some things up, but you might retain capacity to do other things. Your attorneys, when they're operating your power of attorney or acting for you, making those decisions for you, should be mindful of that at all times.
They should bear in mind the fact that there are some things that you can still do for yourself, even if there are other things that you need support with.
00:12:04 David Lee, Host
When people talk about power of attorney for the first time, do you find it's well understood or is it something that people are a bit anxious about and they don't really understand what it's all about?
00:12:18 Jennifer Hall, Head of national support services, Alzheimer Scotland
Yeah, I think anxious is a very good way to describe what we hear from a lot of people accessing support from Alzheimer Scotland. I think it's really interesting what Jessica was saying and describing what power of attorney can offer people, but there are a lot of myths and misconceptions around what that means.
For example, my parents were guarded about putting in place a power of attorney based on when does that kick in? Is that kept in the bottom drawer until such times as I lose capacity, or can somebody step in and make decisions that I'm not OK with?
So that's where the principles of the adults with incapacity legislation come in and are really, really important.
I don't feel like a lot of family carers and people with dementia have a really good understanding about what those principles mean and how they should look in practice. So, making sure that carers particularly if they've taken on the responsibility of a power of attorney, that they are really up to speed on what their responsibilities are.
When they're making decisions, they're making the decisions for the person who is lacking in that area of capacity, they've been making those decisions anyway. So, it's not the decisions that they would make, it's the decisions that the person would make. And that should be spelled out from the outset when you're putting that document in place, particularly when it comes to the decisions around welfare for example, or care, going forward.
00:13:51 David Lee, Host
And just to put it in a wider context, Jessica, we've talked there a lot about power of attorney, what about that bigger picture of wealth management, tax planning, potential impacts on a family business?
How important is it to look at that big picture?
00:14:10 Jessica Flowerdew, Senior associate, Brodies LLP
It’s really important and that's where the bespoke advice comes in as not everybody’s circumstances are the same.
People have different family backgrounds, different situations, different things that they're looking to achieve and and it's really important to think about that and to think about the impact that your incapacity might have on those things.
So, encouraging clients to have discussions with their families and with the people that they're choosing to appoint as their attorneys about what their wishes are around those things is really important.
Because, as Jennifer said, their attorneys are duty bound to adhere to the principles in adults with incapacity legislation in Scotland and part of their duty is to take into consideration the grantors views at all times, in everything that they do.
So, it's really important for someone who's putting that document in place to think about what they would want.
There are different things that that people can do to make those wishes explicitly clear, for example, to draft a letter of wishes that's kept alongside your power of attorney, that provides your attorneys with very detailed instructions about what you would want.
So, if you do have a family business, for example, detailed instructions about how you would like that to be dealt with. If you're in the habit of making gifts for tax planning reasons, you might want to leave your attorney directions about that and about how they should continue to manage that for you in the future.
You might have strong views about your care. So, you might have views about things that are as fundamental as what you wear and what color your hair is and things like that and you're at liberty to record that in a letter to your attorneys.
00:16:26 David Lee, Host
That's interesting that you can put practical considerations into that document.
And Jen, again, we've touched a lot there on the kind of legal side of things but we're morphing into that kind of personal side as well of making sure that a grantors’ wishes are very much followed.
What is that wider support, beyond the legal issues, that's available for individuals and families after a diagnosis of dementia?
00:16:54 Jennifer Hall, Head of national support services, Alzheimer Scotland
Once a person receives a diagnosis, they are entitled to a minimum of one year post diagnostic support.
Now people can refer into that at the point of diagnosis, or a different referral to post diagnostic support should be made.
So it's important that people are aware that that is their right and they can chase that up, they can follow that up with the person who gave the diagnosis to them.
Now beyond that, Alzheimer Scotland have got very strong local routes across Scotland, but we are a national organization so we have a a network of dementia advisors that operate across Scotland and more often than not people will have a dementia advisor in their local area.
So I would encourage people that are worried that they have a diagnosis of dementia, that are caring for somebody with dementia, or that may have a friend or a family member that is struggling with dementia, to get in touch with their local service.
The helpline is often the first point of contact for people. We can offer information, we can provide emotional support. A lot of the people that call our helpline are often in a point of crisis, things have really got to breaking point because they have been doing things for so long with little support.
But it's important that people know that there is support available. Sometimes it can be a challenge to access, and it's knowing what’s there and what's available.
But if you call our helpline, we'll be able to point you in the right direction and provide you with information and along the way.
So that’s a bit about what Alzheimer Scotland deliver, but also there's other, you know points of support out there as well that we can signpost on to and if it's appropriate to do so.
So I would encourage people to get in touch.
00:18:56 David Lee, Host
And we said before, it's very much a spectrum, dementia isn't just one thing.
Can you give us some examples of those real diverse experiences of people living with dementia in their day-to-day lives?
00:19:10 Jennifer Hall, Head of national support services, Alzheimer Scotland
It's so hard because it's such an individual experience.
I remember meeting a gentleman who was our chair for the Scottish Dementia Working Group, Henry Rankin. Henry had a diagnosis of dementia and he says to me, “once you've met somebody with dementia, you've met one person with dementia.”
The experience can be so unique so, what I would say is that dementia is something that is still very much shrouded in stigma and people still struggle to talk about it.
For some people it's this thing about their identity and how that is chipped away at, as dementia progresses. But it's really important to know that it is possible to live well with dementia.
In the absence of a cure - we don't have a cure for dementia at the moment but it is important that people know that there are things that they can do that promotes a really good quality of life and that ensures that they can live well. But that includes reaching out for support, we all need support at different points in our life.
So, what I would say is we've got the Scottish Dementia Working Group, which is a group of people with lived experience, they've all got a diagnosis in that group. They are fundamental to fighting for that kind of change that you want to see in policy to improve the lived experience and to make sure that people with dementia have their rights realized and enshrined in law.
They are a really active group and they're people with that diagnosis, I suppose that they're really illustrating day-to-day that it is possible to live well if you've got the right support in place.
00:20:49 David Lee, Host
And Jessica I'm sure family dynamics sometimes do get in the way of powers of attorney and taking that the right way forward for someone who is diagnosed.
How do you help people make those difficult decisions about what needs to be done and how important is it that as well as giving that legal advice, you've got that empathy and understanding of that different experience?
00:21:18 Jessica Flowerdew, Senior associate, Brodies LLP
So everybody’s experience of this is very different and no two clients are the same.
We encourage our younger clients to discuss things with their parents too, to speak about powers of attorney. Encourage them to start that conversation with them. That's usually the best way to approach these topics with them, with people who perhaps are more elderly, more vulnerable or afraid and anxious.
We explain the benefits, the downsides of not planning. We listen to clients’ objectives, and the things that we advise help them achieve those. We listen to any concerns that they have.
We encourage clients not to shy away from doing what needs to be done because it does involve challenging decisions.
I had a client very recently who doesn't have any obvious family members to help her. She wasn't married, she doesn't have any children and she's lived on her own her whole life, there just wasn't anyone that she could think of appointing, particularly in a welfare capacity. It's such a personal role for someone to take on.
We had a number of meetings, we met on numerous different occasions to talk through various options and we eventually got somewhere with a prospective attorney, somebody that she thought could be a good option.
She wanted me to speak to that person. She wanted me to explain what was involved in the role, to point her in the direction of guidance. There’s very comprehensive Scottish Government guidance on acting for somebody in the role of an attorney.
I had numerous conversations with the prospective attorney and in the end she's now going ahead and she's going to sign for a welfare power of attorney, which is which is great and and it was important to take the time to get there to take the time to talk through the options.
It was a very difficult decision for her because of her particular circumstances and her concerns about the family members that she does have around her.
There are different options where powers of attorney are concerned and we discuss those with clients.
So you can appoint several people as your continuing and welfare attorneys. You can appoint them jointly so that they act together they are usually when you grant a power of attorney, your attorneys are able to act alone. So if you appoint more than one attorney, they can make decisions alone, but they're duty bound to consult with one another. So the client has that comfort of knowing that they're not just handing over all of this decision making power to one person, they're handing that over to two or to several people who will have differences of opinion, who will have discussions about what's right.
You can appoint substitute attorney, so you can appoint someone who would act in the first place, and if that person is unable to act, then you've got someone else stepping in, but only stepping in if that initial appointment can't go ahead or has to stop for whatever reason.
So there are different ways to draft this document and not every client is going to give you the same instructions because everybody's circumstances are different.
00:25:19 David Lee, Host
What if two siblings who are joint powers of attorney disagree on what's the right thing to do?
00:25:25 Jessica Flowerdew, Senior associate, Brodies LLP
Yeah, that's common, it does it does happen.
I would always encourage attorneys to talk things through, to try and work things out together, to go back to that guidance, come to that detailed guidance to think through the principles, to discuss matters again.
Attorneys must consider other people's points of view as well. So they must look to other people around the adult that they're supporting to take other considerations when they're acting on behalf of an adult. So I would encourage them to do that, and they can always look to the office of the Public Guardian for some support. They are very helpful, and they have a helpline as well for financial attorneys, so I often direct clients there.
I direct clients to the Mental Welfare Commission where they're struggling to make welfare decisions on behalf of an adult or also to the local authority and to social work, they can also be a great support to attorneys who are struggling to make the right decisions for an adult.
But it's just encouraging people that it's OK to have disagreements, in fact that's normal and you would expect that to happen. But I think encouraging people to sit down and talk about them and and work things through together to come to a united decision, is really important.
00:26:50 David Lee, Host
And, Jen, those family dynamics.
When somebody comes to the help line if it's a family member, they might be giving you a particular version of events that may not accord with someone else who may be another joint power of attorney.
How do you cut through those challenging family dynamics at Alzheimer Scotland?
00:27:11 Jennifer Hall, Head of national support services, Alzheimer Scotland
We hear that so much, particularly the helpline because it's anonymous and confidential, we do hear about that breakdown in family relationships and that tension that comes sometimes when there's really significant decisions to be made.
But just echoing what Jessica said, it's very much and encouraging people to go back to the principles to think about what this means for the individual because that sound awareness and understanding of those principles is really key to finding that connection that allows families to make decisions in the person's best interests.
00:27:51 David Lee, Host
OK. We're going to kind of conclude now, Jen.
So first, can you summarize the sort of broad advice that you would give to individuals and families after a diagnosis of dementia and that hopefully can lead to better outcomes for all concerned?
00:28:10 Jennifer Hall, Head of national support services, Alzheimer Scotland
Be informed. Dementia is everyone's business, we're all going to be touched by it at some point in our lives. So it's really important that we make ourselves informed about what's out there and what's available and how we can support people to live well and how individuals can live well.
We want to make sure that we're not waiting until people end up in a crisis and to reach out and get support that forward plan and being proactive there and getting things like power of attorneys in place and from the get-go is really, really important and it will be a tool that helps people to live well just knowing that peace of mind, you've got that in place should you need that.
Also speak to people. Peer support is so important, knowing that you're not in this on your own. Dementia can be a traumatic experience for the individual, but for everyone involved. So, making sure that you're talking to people and getting good support from your peers and accessing that. So, get in touch with Alzheimer Scotland if you're unaware of where to access that support and we can try and point you in the right direction.
00:29:18 David Lee, Host
And Jessica, a final word to you.
What's your broad advice to individuals and families after a diagnosis of dementia?
What are the simple points they follow?
00:29:28 Jessica Flowerdew, Senior associate, Brodies LLP
Come and speak to us. We will listen to your objectives, your concerns and the advice that we'll give will be bespoke to you and to your family, your circumstances, bearing in mind what worries you, what you want to achieve.
There's no one-size-fits-all approach and as Jennifer said, there's no one experience of dementia.
So it will be bespoke advice tailored to you and to your circumstances, thinking about your future and how you want to protect that and make sure that you have that peace of mind and that will look different for different people.
00:30:16 David Lee, Host
So be informed and talk to people who've been in similar situations.
Get professional advice, and just above all else, ask questions. Just talk and ask questions. Find out as much as you can if you do find yourself in this situation.
Thank you so much to Jen and to Jessica for the excellent insights today.
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