Tag Archives: Dementia

Early onset dementia

2 May

Early onset dementia

Dementia is a difficult condition for everyone to deal with, the person with the dementia and their friends and family around them as well.  But there is something particularly difficult about early onset dementia!  Early onset is considered to be anyone under the age of 65, it is sometimes also referred to as “working age dementia”.


Age is the biggest risk fact for dementia, the statistics are that around 1 in 14 people over the age of 65 have a dementia and 1 in 6 over the age of 80.  There are estimated to be around 42,000 currently in the UK with early onset dementia.  The kinds of dementias that people develop when they are younger is different, as 1/3 of young people with dementia have atypical Alzheimer’s, however this proportion is only 5% in people over 65.  People with Down syndrome and other learning impairments are more likely to develop dementia at a younger age.*


Generally, the causes of early onset dementia are considered to be the same as those of later stages of dementia, however it appears that with early onset dementia, there is a higher incidence of a genetic link.  This clearly has implications for any biological relatives of the person with dementia and genetic testing is available.  Care should be taken when considering the issue of genetic testing, as the results can be difficult to receive for those biological relatives of the person with dementia that this might affect.  They will then live with the Damocles sword of the possible development of dementia in the future!  There are also issues around finance when something like this becomes known, as it could impact on the cost and availability of products such as life assurance or travel insurance.


There are other issues that relate to family structures, as people of working age often do not have their financial retirement situation, as their financial plans are interrupted by their condition and usually have to leave work after the symptoms of the condition mean that it is no longer possible to work.  This creates financial hardship for the family.


The pressures of caring for someone with a dementia are significant and can be particularly challenging with an early onset dementia, as the caring role begins at a time when the expectations of their life were very different.  There could be school age children in the house, so normal activities like taking the children to school, assisting with homework and going on holiday are all very different.  The pressures that are caused can therefore lead to a breakdown of the marriage.  There can be embarrassment and shame associated with these issues for both the spouse and the children of the person with dementia, all of which leads to further breakdown in ongoing relationships, even after the divorce.


The care that is available for people with early onset dementia is often not suitable, as it is geared towards an older age group and they are therefore both not surrounded by their peers, but also the interventions are not as suitable.  This can be improved with a direct payment to ensure that the person with dementia can commission their own care and attend activities that are more relevant and appropriate for them.


*Alzheimer’s society


Sexually inappropriate behaviour

4 Apr


Sexually inappropriate behaviour


With a dementia, there can be some side effects, which can be challenging to manage. Although sexually inappropriate behaviour is not the most common side effect, it can still be displayed. This then creates problems for all parties involved in this situation.


For other people who were nearby, including friends, family and carers, they are potentially at risk of experiencing this inappropriate sexual behaviour. For able-bodied carers and family members they should be able to redirect the person or at the very least defend themselves against something unwanted. However somebody more physically vulnerable, such as a co-resident in a care home, could find themselves the victims of an assault. The criminal offence of sexual assault, requires the understanding that this is an assault, however this is not present in somebody with a dementia, therefore this could be seen as a situation with two victims.


The family of an individual displaying inappropriate sexual behaviour find this very embarrassing as well as challenging to manage. It can also lead to breakdown or at least issues with family relations as visiting that person might put themselves or other family members they bring with them at risk. I have heard of cases where family members do not bring their young children to the house of the person with dementia to protect them from potential assault or witnessing an assault.


This kind of presentation requires specialist help to care for them and often in numbers of at least two carers and possibly more, depending upon how insistent the person with dementia is. In a care home or domiciliary home, the professional carer is entitled to a safe working environment. The family want to be able to visit their loved one without having to worry about what might happen.


The person with dementia could be sectioned under the Mental Health Act, initially under section 2 and if they are unable to be treated within the 28 days that section 2 is valid for, they could be sectioned under section 3. Section 3 lasts for up to 6 months before it needs to be renewed, however people will be discharged from the mental health unit in which they are detained as soon they are able to be released into the community or to a care home, therefore they might be in the mental health unit for less than a period of six months. Often in mental health units, the healthcare professionals will prescribe appropriate medication to modify the person’s behaviour. This could include either anti-anxiety medication and/or anti-psychotic medication. This medication should only be prescribed for as long as it is necessary, and should therefore be reviewed regularly in order to ensure that its ongoing prescription remains appropriate.


This presentation is challenging for lots of reasons and is often not talked about. Although it is not the most common of challenging behaviour associated with dementia, it is nevertheless known to experienced healthcare professionals who care for people living with dementia. If this affects you and you wish to have some help and support please contact me at Nash & Co.

Disability Adjustments

21 Mar


Disability Adjustments


Nash & Co have recently invested in a portable hearing loop.  We have bought it so that if clients have difficulty hearing, then we can assist.  We want people with disabilities to feel comfortable with us, that we are prepared to assist them, so that they can hear us and with full information, we can listen to what they want to happen.


When we had our new reception done a few months ago, we also changed the small step immediately in front of our new door, so it is now a ramp.  Lots of adjustments don’t have a negative impact on able bodied people but can make a huge difference to those living with disabilities.


When I talk to clients or the relatives and carers of clients with disabilities, I see them as people first, they are not their health issue.  I make sure that when they give me instructions about an issue, that I treat them as that – a person, not just a disabled person.


I recently had a client cry in front of me, he is a carer for his parent and wanted to “hold it together”.  I explained that he was more likely to make himself ill from not engaging with his emotions and bottling them up, than from crying, as I handed him a box of tissues.  I reassured him that he never had to feel that he needed to apologise for crying in front of me.  I have seen many clients cry.  I aim to make a safe space for them to be able to be themselves.  In that space, I can learn about them, their perception of what the main issue is and as a result help them to achieve the outcome that they want, once I know about them.


Life as a carer is tough, 85% of carers of someone with a dementia has a clinical depression within a year of diagnosis*.  It can force both the cared for and carer to cross boundaries that they hoped they would never have to, such as helping someone go to the loo or shower.


Some adjustments are easy and being kind and compassionate is one of them.  It is also important to be non-judgmental, a few bad decisions or some bad luck and many of us could find ourselves with an injury or illness.


We need to create a world in which we would want to live, if we had an illness or disability, with compassion and the simple physical adjustments that make life easier, such as the ramp on the front of the Nash building and our portable hearing loop.



*Alzheimer’s Society

Managing the affairs of someone else – A professional appointment – Health and Welfare Decisions

25 Oct


Managing the affairs of someone else – A professional appointment – Health and Welfare Decisions


There are two ways in which a person can be appointed as an ongoing basis to manage the affairs of someone else and this is by appointing them under a power of attorney or the Court of Protection appointing them under a deputy application.  A person can appoint their loved ones or a professional whilst they retain the capacity to do so.  The Court of Protection will appoint someone if this has not happened, they lose capacity and need someone to support them or take over. Health and welfare decisions can only be made when that person lacks capacity to make decisions for themselves, so they are always relying on the decision making of the attorney to make decisions that they would be happy with.


In general, a professional appointment of a solicitor tends to be for finances only, as it is generally accepted that loved ones would know the person well enough to make health and social care decisions, but it would be hard to make decisions against medical advice for a professional who doesn’t know what the individual would want.  It is for this reason that the Court of Protection would be very unlikely to grant a health and welfare deputyship order to a solicitor.


So, there are limited circumstances in which I will agree to act as either deputy or attorney for health and welfare.  The circumstances are either when they have no suitable family member to act and I have had an opportunity to sit down with them and go through their medical history and have an in-depth discussion about their care priorities.


The other circumstance that I will act is where I am co-attorney with a family member who lives further away and needs someone to be “on hand” to deal with the issues that arise.  I would always defer to the family member who knows the person better, however with my experience, I can make suggestions to the co-attorney about how the persons care can be best managed.  This arrangement works well, I stay in communication with the family member and they are able to effectively support their loved one from a long distance away.  The attorneys and the person themselves know that the role will be undertaken professionally and that their distant loved one is supported in their attorney role, which can be distressing with an added element of feeling helpless through the distance in which they live away.


This is work that I love, I get to meet the person and make sure that they are cared for in a manner that is best suited to them and that their loved ones are informed, but still able to maintain their own lives.  It is a great outcome for all!

Managing the affairs of someone else – A professional appointment – financial affairs

11 Oct


Managing the affairs of someone else – A professional appointment – financial affairs


Following on from my last blogs about managing the affairs of another person, what should the person do if they have no-one to do that or if they don’t get on with their family?  They can appoint a professional like me and I act for a number of individuals in some cases for both the finance and health and welfare.  I can also be appointed by the Court to be deputy (which is similar to the authority of an attorney), but these appointments are usually for financial affairs only.


My appointment is no different from the appointment of the family member, with the one exception that I charge a professional fee for the work that I do.  How much the fee is, depends on the complexity of the matter and in particular where they live, as if they live in care and they require the payment of their care fees and an annual welfare visit, the cost is far less than someone who lives in the community and due to issues arising I have to visit every few months.


I have a duty to maximise the estate for the benefit of that person, which means that I have an obligation to ensure that the funds are appropriately invested to ensure that there is an income.  I need to give consideration to the income and how the money is being spent, as someone who has only a couple of hours care a week or even a day, will spend less money than someone who has a full time live in carer.  How the estate should be managed has to have all the relevant information taken into account so that a bespoke strategy is achieved.  I even have to consider how much money is kept in one bank, as if the bank goes bust only the first £85,000 is insured and the rest could be lost.  I have to consider moving the excess to protect the client, if the worst happens.


I might be asked to make gifts and I have to consider whether that is reasonable.  I might have to take control of high value assets, so jewellery might need to go into a safety deposit.  If they have a safety deposit box, then I will need to know what is in it.


It is also useful to know what is in the Will, so that I don’t sell anything that is specifically gifted in their Will, such as jewellery or property.  If the donor leaves their house to someone and I’ve sold it, the disappointed beneficiary will not be happy with me and this is a circumstance that a statutory Will might be appropriated, so that the Court of Protection will grant a new Will giving a share of the estate that equates to the value of the property to that beneficiary.  So if there is a house worth £200,000 and cash worth £100,000, when the property is sold, whoever receives the cash will get £300,000 if there is only cash, but the Statutory Will would give 2/3 to the person who would have had the property and 1/3 to the person who would have had the cash.


My overall aim is to ensure that the wishes of the person are carried out as far as is possible to achieve, so if the client doesn’t want to go into care and it is possible to arrange their care in such a way to achieve that, then I do so.  If their primary concern is to be safe and cared for, then admission into care in some circumstances might be the right decision for them.  How I deal with their money depends on what their financial needs are, what their income is and what their capital is.


The firm that I work for has to insure the client’s money as part of their liability insurance, so within the firm there are safeguards to ensure that the clients’ money is safe from fraud or theft, including from me!  It is for this reason that I would not act with a co-attorney for financial matters, as I remain also responsible for the running of their affairs, including the fraud by co-attorney.


Having authority over another’s affairs is a big responsibility, which I take very seriously to ensure that the person is cared for as best as is possible to achieve and in the way that they want.


Managing the affairs of someone else – Financial Affairs

20 Sep


Managing the affairs of someone else – Financial Affairs


Following on from my last blog about managing the health and welfare decisions of another person, how do you manage the financial affairs of another person?


The starting principles are the same as with the health and welfare, what did the person themselves do before they became ill?  This should form a very important part of your decision, but you are not there to make their decisions, you make your own.  The question is what is in their best interests and all aspects of this issue should be taken into account when making this decision.


With regards to finances though, there are some rules around what can and cannot be done, as access to money puts the person at risk of fraud and theft.


Firstly, the attorney and donor should not have mixed finances, the funds should be clearly separated out into different accounts, so what money belongs to whom is clear.


If there is a large sum to invest, such as the proceeds of the sale of a property, then the investment strategy should be undertaken with the advice of a financial advisor, who will carefully look at the situation and work out what the investment risk profile of this person should be.  Depending on the circumstances, including the health issues and life expectancy of the donor and the amount of money involved, there could be lots of different scenarios to consider in financial terms.


The donor should not make investments into the business of the attorney, to provide financial support for them.  This is considered gifting, rather than investing and there should be a great deal of care taken over gifting.  This is also an issue of mixed finances, which again, should not happen.


Gifting is a big issue and I get asked lots of questions about this.  Can the attorney make gifts?  There is no simple answer, the phrase that is used regarding gifting is that it should be “on occasion” and “reasonable in all the circumstances and in particular to the size of the estate”.


What does on occasion mean?  It is birthdays, Christmas, graduation, house warming etc, gifting should be done at these specific times for specific religious, family or cultural reasons, not just because someone is short of money or has seen something in the shops that they fancy!


What about “reasonable in all the circumstances”?  The gift must be one that the donor either did or would have made had they been well.  There is no reason that they would gift anything to an estranged family member, if they hadn’t done in the years preceding their illness.  A plant or toaster is a suitable house warming present, the gift itself must be suitable for the occasion.


The other key part of the phrase about the gift being reasonable, is that it must be reasonable in particular to the size of the estate.  The Court of Protection has said that if the estate is over the value of the nil rate band, which is currently £325,000, then if there is nothing unusual about the estate, then the attorney can give away the £3,000 per year that is exempt for inheritance tax.  Where the size of the estate is smaller, part of the consideration will be what gifting that person made when they were well, such as £10 for the birthdays and Christmas of their two children will cost £40 per year, which would be reasonable for a modest sized estate.  When in doubt, the emphasis is to be less generous rather than more or to not make the gift at all.  Any gifts larger than the £3,000 discussed above or loans to the attorney would need specific Court approval.  The Court’s general view is that money is for the donor and not for anyone else, so there needs to be a good reason to gift it, but thinking fondly of someone is considered a good reason.


Managing the affairs of another person can be challenging, often because it comes at a time when the family is in distress anyway, because their loved one is unwell.  I am happy to provide support to those attorneys who need some advice.


Managing the affairs of someone else – Health and Welfare

6 Sep


Managing the affairs of someone else – Health and Welfare


In the past I’ve discussed creating LPAs, so that you can appoint another person to manage your affairs, if you become unable to do so.  It is probably worthwhile looking at this from the other angle, how do you manage the affairs of another person?


I’m going to take these subjects one blog at a time, starting with how to make health and welfare decisions for another person.


The only time that you can ever make decisions about another person’s health and social care decisions is when they lack capacity to make decisions themselves.  Each decision is different, it relates to the complexity of that individual decision and the time in which it needs to be made.  So people can lack capacity for complex decisions (such as what care to have or where to live) and still have capacity for simple decisions (such as whether they are thirsty or want to eat chocolate).  We almost all have something that is a pleasure to us, it becomes a habit, it might be a certain piece of clothing or a certain food (chocolate is a good example) and so people know for a long time that they like that thing, even when they lack insight into the bigger picture of their situation.


So the things to consider when making a decision is what would the person want?  That doesn’t necessarily mean that this is the decision that you will make, but it has to be a big influence on your decision.  Sometimes what people want isn’t possible (most people don’t want to go into care, but it might become necessary).  They might not want to make a fuss and accept what is going to happen, but that also might not be the right thing for them.


When making a decision you have to look at all the factors, the pros and cons of any situation and in the end you make the decision yourself, if you are attorney or deputy for health and welfare.  It must be an individual decision taking into account all the information that you know about this person, it should not be a generic decision about someone of the same age, race, gender, disability etc.  People have the right to make an “unwise choice” and should not be deemed to lack capacity because they do so and this also goes for attorneys, but the unwise choice must be in their best interests.  The primary purpose of the decision should not be to end or shorten their life, even if that is the case, there need to be another motivation to make a decision to shorten someone’s life, around why it is in their best interests.  This is to overcome the potential conflict of interest that arises when an attorney is a beneficiary of the estate and will ultimately inherit, so the shortening of life will hasten the inheritance.


Whatever you decide, you are responsible for the decision and the reasons behind the making of that decision, so if this is ever questioned by a family member of the authorities, the attorney will be able to stand by their decision and the reasons that they made it.  If the decision is not in their best interests, such as discharging a very poorly person from hospital to their home with no package of care, it would be considered neglect and an application to the Court of Protection to have that person removed could be made.


I’ve been consulted about lots of these kinds of matters and they are often around going into care, the continuation of medication etc, however I’ve also had the point raised by a client that they were a football supporter and did not want to wear the football strip of their rival team.  Universally the important decisions are often where someone should be cared for and their end of life decisions.  In order to help your potential attorneys, it is useful to have a conversation about these issues, so that they know your views.