TUDelft: Your experiences in money management are asked for.

[pamelaasberg]

Dear all,

At first let me say thank you to all of you caring for someone who unluckily has Alzheimer’s. I’m not in the situation where I personally do, but I can imagine it is hard to see somebody change..

I’m a third year Bachelor student from the Netherlands (Technical University Delft might sound familiar) and I’m doing my final project on designing a product to support people with Dementia with their personal money management (when shopping).

I would like to ask you to reply to this post here on this forum with your experiences about the three situations. With your information and experiences I can help people with Dementia.

*Let me refer the person you know that has dementia as your friend.
1. How long has your friend been handling his or her own money management before giving it out of hands? (Examples: paying bills, paying by themselves in-stores and withdrawing money from the bank?)

2. In what way is your friend struggling when he or she is paying at the counter with either cash or card? (Examples: value of money, difference in coins and bills, getting confused?)

3. What might help or support your friend in handling his or her money management for a longer period of time? Do you use any creative way of making sure your friend does not struggle with handling money?


Please take the time to answer these questions, it would help me to design a more personal interaction product. Thank you all and have a good day!

 

[marionq]

Pamela many people on here will give a wry smile at your questions. My husband was diagnosed five years ago but lost appreciation and understanding of money long before that.

I will watch their replies with interest.

 

[pamelaasberg]

Pamela many people on here will give a wry smile at your questions. My husband was diagnosed five years ago but lost appreciation and understanding of money long before that.

I will watch their replies with interest.

Thank you for your respond. I may have formulated the question wrongly, I want to find out where the struggles are and where I can help. It is not particularly about the period of time of someone not dealing with money anymore, I'm curious about what aspects I can come in place. What might had been handy to have for him to be longer understanding money? Was it mostly the value of money that was slowly disappearing?

 

[Philbo]

A year or so before my wife was diagnosed with Fronto Temporal Dementia (Jan 2014), she showed signs of loosing her confidence to go out shopping on her own. A key "signpost" that things were wrong (looking back), was that she found it difficult to sign her name. She would tend to struggle to write and printed her name in block capitals. This got worse as time went on and she also struggled to answer security questions when dealing with the bank etc.

In the UK, most organisation used to be happy for someone to verbally give authority for their "representative" to speak on their behalf. These days, things are a lot stricter (understandably) so it makes it much harder for either the person with dementia to manage their own affairs, or for the caregiver to act on their behalf.

Even if you've managed to get the necessary Lasting Powder of Attorneys (LPA), many institutions still seem to make it difficult.

 

[CarerForMum]

1. How long has your friend been handling his or her own money management before giving it out of hands? (Examples: paying bills, paying by themselves in-stores and withdrawing money from the bank?) About six months after diagnosis.

2. In what way is your friend struggling when he or she is paying at the counter with either cash or card? (Examples: value of money, difference in coins and bills, getting confused?) Refers to money as shillings and pence, plays it safe by paying for things with pound notes and not loose change, in the hope that she received the right change.

3. What might help or support your friend in handling his or her money management for a longer period of time? Do you use any creative way of making sure your friend does not struggle with handling money? All bills are paid by direct debit and only has a small amount of money at any one time. Accompany her to the bank, 9/10 times cannot remember her pin, so I help and withdraws only £10 at a time. Larger purchases (clothing) 'we' use her debit card so no cash is needed.

 

[Katrine]

You are asking about a very broad subject, to which there are no easy design solutions. Product designers do come up with good ideas that can help some people in a specific situation. However, there is no 'one size fits all' solution to any problem where dementia is concerned.

My MIL experienced the following problems with judgment and memory, in relation to money:

• Drawing cash several times a day because she didn't remember going to the bank.
• Hiding large amounts of cash in the house - reasoning with dementia logic that if she got ill or the weather was bad then she wouldn't be able to get to the bank and so would have no money for food.
• Throwing away important documents because they were supposedly old and out of date.
• Going to the bank with a criminal who persuaded her that she needed work doing on her house, and giving him a large sum in cash.

SHOPPING

With regards to shopping, people with dementia cope best when they are following a familiar routine. My MIL coped with small local shops better than going to a large noisy supermarket where they keep changing the displays and moving things to different aisles.

As MIL needed more help with shopping, family members would take her to the supermarket to provide assistance. In our experience it was very important to write a list at her home before setting out. She had lost the ability to remember what she already had at home. If she went shopping without a good list then she would just buy a number of standard items, whether she needed them or not.

When we accompanied MIL shopping, it was best to let her go round the shop at her own slow pace. Sometimes she would take ages examining labels before making a selection, but it helped to maintain her confidence if we didn't try to hurry her. People with dementia have problems with visual perception, especially in a crowded artificially-lit place. All the noises, and other people moving about, cause extra distraction.

Towards the end of her ability to shop MIL would refuse to buy things that she thought were too expensive, or would be attracted only by those items she thought were bargains. In fact she was generally misunderstanding the supermarket pricing of 'special offers'.

Left to herself she might go home without buying important foods because she had by then lost the ability to choose the right one. As she lost track of time, and food preparation skills, she wasn't able to prepare regular meals. Often she would realise mid-afternoon that she was really hungry and would go to the corner shop for biscuits, cake and ice cream, high carbohydrate snacks that can be eaten quickly without preparation.

Yes, of course there were issues over recognising coins and notes, and perception of the value of money itself, or remembering her card PIN, but shopping problems were so much more than that. In our experience, MIL was still coping with shopping by herself for a long while because she was determined to do so. Although she obviously struggled and found it stressful, it was also an important part of her feeling independent and a sensible grown-up person. She resisted being 'taken shopping' until she knew herself that she couldn't cope.

 

[pamelaasberg]

1. How long has your friend been handling his or her own money management before giving it out of hands? (Examples: paying bills, paying by themselves in-stores and withdrawing money from the bank?) About six months after diagnosis.

2. In what way is your friend struggling when he or she is paying at the counter with either cash or card? (Examples: value of money, difference in coins and bills, getting confused?) Refers to money as shillings and pence, plays it safe by paying for things with pound notes and not loose change, in the hope that she received the right change.

3. What might help or support your friend in handling his or her money management for a longer period of time? Do you use any creative way of making sure your friend does not struggle with handling money? All bills are paid by direct debit and only has a small amount of money at any one time. Accompany her to the bank, 9/10 times cannot remember her pin, so I help and withdraws only £10 at a time. Larger purchases (clothing) 'we' use her debit card so no cash is needed.

Making a debit card that doesn't need a pincode but can be handled with another verification method might be something then? Thanks for your respond!

Yes, of course there were issues over recognising coins and notes, and perception of the value of money itself, or remembering her card PIN, but shopping problems were so much more than that. In our experience, MIL was still coping with shopping by herself for a long while because she was determined to do so. Although she obviously struggled and found it stressful, it was also an important part of her feeling independent and a sensible grown-up person. She resisted being 'taken shopping' until she knew herself that she couldn't cope.

Nice to have you say this, this is one of my main project goals! To make people feel more secure in their daily rituals, but also to make them feel worthy by not just taking away everything they tend to have struggles with just because of the 'easy way'.

 

[cragmaid]

My late Mother gradually lost the confidence in her abilities before she lost the actual capacity to manage her financial affairs. She would hand her purse to me and as I had both Power of Attorney and joint accounts with her, latterly the duty became mine. Sadly her Dementia increased at the same time as she was losing her sight.

Her major worry was her bank balance. She needed to be reassured constantly that she had money in her accounts. At first I used to print out full bank statements, but as her comprehension faded, I used to print out a simple, large print ( font size 26) note saying Date and Balance for each account. She would carry these around in her bag or pocket. The safe thing about doing this is that no actual account details were shown.

As a practical aid to others, many of us have had to scratch off the security number printed on the rear of debit or credit cards to help to reduce the self afflicted financial abuse i.e unecessary online or telephone shopping.

Another problem many of us carers face, is the failure of financial institutions to recognise the validy of a Registered Lasting Power of Attorney.

I hope some of this helps.

 

[pamelaasberg]

Her major worry was her bank balance. She needed to be reassured constantly that she had money in her accounts. At first I used to print out full bank statements, but as her comprehension faded, I used to print out a simple, large print ( font size 26) note saying Date and Balance for each account. She would carry these around in her bag or pocket. The safe thing about doing this is that no actual account details were shown.

Thank you for your respond! So, the feeling of knowing that there is enough money to live with made her feel satisfied? Why do you think that was? Afraid somebody took it from her?

 

[cragmaid]

No Mum was not frightened that she was being robbed, she was terrified of not being able to pay her way. The fear of not having sufficient money was very great and led her to carry around much larger amounts of cash than was necessarily safe.

 

[Jessbow]

My late mother would have known that if she asked someone to get a loaf of bread, she'd need to give them money with which to do so.

She would have no idea if 10p or £10 was appropriate, or indeed if she should recieve change. She quite often proffered £50 notes.

If you took her out shopping, perhaps she needed new trousers- she would have no idea what a 'sensible' price would be.

 

[Spamar]

My OH was never very interested in money and left all details to me, practically ever since we married. Made it easier when he was diagnosed!
I also handled all major decisions, although I always consulted with him about them.
I noticed that he had difficulty with cash. Didn't know which coin was which. That was the point I took over completely. That was around the time of diagnosis ( which was around three or four years after first noticing memory loss. He was diagnosed with Alzheimer's and vascular dementia).
I gave him any money required for daycare and outings with befrienders in his purse, which he recognised.

I think these things are easier to handle in husband/ wife situation rather than parent/ child. I could never imagine my father handing over money control to me!

 

[Delphie]

My mum's problems with money were down to a combination of her extremely poor memory, paranoia and affected by Alzheimer's bad judgement. She went to the bank most days and would withdraw, on average, probably about £300. She would then hide it somewhere, and forget all about it. Given that there was next to nothing, cash-wise, in her house when she went into care, I guess one of her hiding places was the bin. She went through several thousand pounds while I tried to get the bank to help by limiting the amounts she could withdraw. I think there must have been some kind of a daily limit but it was much higher than it should have been. And even when I was armed with my Deputyship, the bank said no to all my sensible suggestions. The only options were to stop her having all access to her money, as in take her off the account completely, or let her carry on as she pleased. In the end I had to stop her having all access.

The paranoia and her delusions meant that she didn't trust me to help. Her poor judgement, however, resulted in her waltzing around town with a handbag stuffed full of money, which on at least one occasion she showed to a man she didn't know, then accepted a lift home from him (all was well that time, although my stress levels went up once I was told what happened!).

So I'm not sure what kind of help she would have benefited from. Memory prompts were useless, such as writing down on a big calendar the amounts she was taking out of the bank, because she forgot about them and hiding the money was very important to her, so she was caught in this endless loop of I have no money, I have to go to the bank, I have to hide my money, I have no money, I have to go to the bank, I have to hide my money...

 

[Rosnpton]

Have added responses after each question

Dear all,

At first let me say thank you to all of you caring for someone who unluckily has Alzheimer’s. I’m not in the situation where I personally do, but I can imagine it is hard to see somebody change..

I’m a third year Bachelor student from the Netherlands (Technical University Delft might sound familiar) and I’m doing my final project on designing a product to support people with Dementia with their personal money management (when shopping).

I would like to ask you to reply to this post here on this forum with your experiences about the three situations. With your information and experiences I can help people with Dementia.

*Let me refer the person you know that has dementia as your friend.
1. How long has your friend been handling his or her own money management before giving it out of hands? (Examples: paying bills, paying by themselves in-stores and withdrawing money from the bank?)

Mum didn't understand paying a bill or how to get money from post office for a good 12 months before diagnosed.


2. In what way is your friend struggling when he or she is paying at the counter with either cash or card? (Examples: value of money, difference in coins and bills, getting confused?)


Didn't recognise the value of the notes or coins,would often just hand her purse to check out operator and 'trust'them. Would put any card into chip and pin machine without knowing which acc it would debit or if was actually bus pass.


3. What might help or support your friend in handling his or her money management for a longer period of time? Do you use any creative way of making sure your friend does not struggle with handling money?

We had to take over quite quickly to safe guard mum as would give £20 for a £5.00 shop and not know what change to expect


Please take the time to answer these questions, it would help me to design a more personal interaction product. Thank you all and have a good day!

 

[canary]

Mum was another one who worried about having no money, would go to the bank, draw out huge sums and then come home and hide it.

When she went into her care home she was found with £700 in cash in her handbag. I sorted out her home and found huge amounts stashed away in her knicker drawer, yet I also found unpaid bills "posted" between the towels in the airing cupboard. Before she went into her care home she was completely paranoid about her finances and thought everyone was stealing from her - including me - yet after she went into her care home and I took over her financial affairs her paranoia and anxiety levels reduced considerably and she became happy with me sorting out her finances, so long as she had what she thought was some money in her purse. In fact, it was some (very obviously) fake notes.

I think mum was losing the whole concept of money and didnt know how to deal with it, yet she retained the memory that having money was important. I feel sure that desperately trying to cope with something that she no longer understood contributed massively to her anxiety.

 

[Beate]

And herein I think lies an important message - sometimes we try too hard with all kinds of methods and gadgets to keep someone independent when they really can't cope with the responsibility anymore. Dealing with money is too important to leave it to "helpful gadgets" in my opinion. What a PWD needs is to give someone POA and for that person to very closely monitor how money is handled so they can step in if big sums are withdrawn or lost. As has been said, a few fake banknotes is all it takes sometimes to keep a PWD happy, while the real transactions are taken by someone else. I have no problem admitting that I took OH's bank card away the moment I noticed several withdrawals of £100, but no sign of the money. Thankfully, Internet banking with all the log-in details was way beyond him by then.

You'd also have to be very careful that whatever you design to make banking easier doesn't simply make it less secure. Personally, I absolutely hate the fact that you can spend money on your card simply by touching it on a card reader. Only up to £30 I believe, but do that a lot and the money disappears quickly, plus whoever gets your card into their fingers can just do the same.