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Managing medications in the home

milrose2021

Registered User
Jul 7, 2021
10
0
Hi,
I am a researcher who really wants to use my research skills to support people with dementia and their family caregivers with managing medications whilst living in their own home. From my very little experience in a previous study that explored how people with dementia and family caregivers view and manage medications, I have a sense that this topic is a mindfield!

I wondered what are the most pressing issues related to medications that people would like solving/support with?

Many thanks in advance.
Rosemary
 

Grannie G

Volunteer Moderator
Apr 3, 2006
74,365
0
Kent
Hello @milrose2021

In the earlier pre diagnosis days of my mother`s dementia, because she was a person who hardly ever took pharma drugs she forgot to renew her prescriptions.

When I consulted her GP about my concerns for her behaviour she hadn`t seen him for 2 years, nor had she received repeat prescriptions for Thyroxine which I believe can affect memory if too low.

My mother lived alone after diagnosis and was given a dosette box with her medication placed by the pharmacy for each day of the week.

As the dementia progressed, my mother was confused by an empty space so proceeded to share all her medication between all the days so that every space was filled.

My husband who lived with me, found some of his medication difficult to swallow. Instead of discussing it, he threw his tablets out of the toilet window and they were found by our 7 year old grandson.
 

Dunroamin

Registered User
May 5, 2019
123
0
UK
As a PWD I use a daily dosage dispenser filled by by partner. He has to check twice daily that I have taken my tablets. The fact the dispenser has the day, and am or pm on each aperture, is mostly lost on me. Apparently yesterday I didn't eat as I thought I had - so even though I can write a post, you can see that this subject really is the minefield you suggest @milrose2021. Best wishes for your research
 

lemonbalm

Registered User
May 21, 2018
1,731
0
Before my mum went into residential care, she had a dosette box but it wasn't any help as her sense of time went a bit bananas quite early on. She had no idea what day it was or whether it was morning, afternoon or evening. It really needs another person to deal with medication in many cases and can be quite dangerous to have medication around at all for someone with dementia living alone due to risk of overdose. Prompts didn't work for mum as she would immediately forget or get distracted. Good luck with the research @milrose2021
 

Sarasa

Volunteer Host
Apr 13, 2018
3,690
0
My mother was a very fit and healthy 90 year old living alone, when her dementia really took hold and she became muddled with her medication. Fortunately nothing she took was critical to her well being as she became very confused about it all. She wasn’t sure what to take and when, not helped by being convinced her neighbours were stealing them. In the end she had a meltdown in her gp’s surgery as she thought they’d deliberately given her the wrong drugs. That led to the suggestion of a Dossette box. That didn’t work, mum had very poor eyesight and couldn’t see the compartments properly. She also felt it a deliberate attempt to upset her. The gp decided to stop all mum’s medication at that point, obviously not something that could have been done if it was essential. Shortly afterwards she went into care and her blood pressure tablets have been reinstated. Mum was very adverse to having any help, so I’m not sure having someone come in to give them to her would have worked.
 

Banjomansmate

Registered User
Jan 13, 2019
3,079
0
Dorset
Coming from a different angle, I sometimes wonder how someone with dementia copes with the constantly changing appearance of tablets now that pharmacies obtain their stocks from wherever they can. I take four tablets daily and my repeat prescriptions come in different sizes, shapes and colours. The same meds can be really small oval tablets that I struggle to handle or large round ones. Some are packed 7 to a sheet while others come in 14s with the days of the week printed on the back of the foil, making it easier to keep track. I often have to double check that I am taking the correct meds. It must be so confusing to someone who is struggling with understanding and/or memory problems.

In relation to the dosett boxes The Banjoman struggled with them as (as far as I remember them) the days of the week etc. were printed on the front but not on the back so he was completely stumped as to which one to open because his loss of physical dexterity meant he opened them from the paper side. The only way I could get him to take tablets in the right order was to write the numbers 1 to ….whatever, on the back of each compartment in bold felt tip then phone him up at the time of day to take them and talk him through opening the correctly numbered compartment and hope that he then actually managed to swallow the blasted tablet without putting it down somewhere, knocking it onto the floor or generally mislaying and forgetting to take it. With antibiotics 4x a day it was a nightmare.
By this stage of LBD he was using a fixed line phone because he was forever losing, misplacing and forgetting to put a handset back on the base to recharge, consequently the phone was in the living room and the dosett box in the kitchen otherwise he mislaid the dosett box. None of it was easy either for him or me!
 

Bod

Registered User
Aug 30, 2013
1,423
0
As the PWD progresses, medication goes from, collection from chemist as and when required, to dosett boxes, supplied in weekly/monthly quantities often delivered by chemist. Then to Carer visits twice or more times a day to ensure the correct medication is actually taken. Medication may at this stage be locked up to prevent the PWD interfering with it, either taking excess, or throwing away!
Regular medication reviews should take place, by the GP, to remove unnessary tablets. Statins taken by 80-90 year olds are not really going to have any realistic effect, for example.

Bod
 

thistlejak

Registered User
Jun 6, 2020
113
0
We had two PWD at home with different presentations/issues.
MIL had dosset boxes for years but they didn't work too well as she was not orientated to days. We tried prompts but she would say that she had taken them and would argue that the days were wrong or that she had her own system of days. We found months worth of boxes hidden all over the house. We then tried an electronic dispenser for her but she was still insisting that it was wrong/ had given her them twice /she had already taken them and even went into kitchen to take them and put them in the bin! This went on for years. It is only now she is in a Nursing Home that she takes them daily. In total we had issues with her and medication for about 10 years.
FIL got mixed up with his medication as it changed monthly after warfarin blood tests - the more it altered the worse it got. We got the warfarin changed to Rivaroxaban and got dosset boxes. They didn't work too well so we got him an electronic dispenser which he loved, he always did like a gadget. He had his electronic box about 2 years before MIL and for 4 years in total. She got the tablets out for him everyday and he took them no problem. So even though she was used to the dispenser for her husband and continued to give him his tablets everyday until he went into care ( 6 months before her) she never engaged with it for herself.
I agree about regular reviews and removal of unnecessary medication - we also got everything to 'once a day' to minimise the battles with MIL but it still didn't work.
 

My Mum's Daughter

Registered User
Feb 8, 2020
112
0
We use a dosset box marked clearly with the days of the week. Mum's med are put in every lunchtime, the box is put in an obscure place near the phone and then I call her every morning and reminder her that her tablets need to be taken.
Mum is considered to be in the mild stages but the reality is, she has little to no, short term memory.
 

milrose2021

Registered User
Jul 7, 2021
10
0
Hello @milrose2021

In the earlier pre diagnosis days of my mother`s dementia, because she was a person who hardly ever took pharma drugs she forgot to renew her prescriptions.

When I consulted her GP about my concerns for her behaviour she hadn`t seen him for 2 years, nor had she received repeat prescriptions for Thyroxine which I believe can affect memory if too low.

My mother lived alone after diagnosis and was given a dosette box with her medication placed by the pharmacy for each day of the week.

As the dementia progressed, my mother was confused by an empty space so proceeded to share all her medication between all the days so that every space was filled.

My husband who lived with me, found some of his medication difficult to swallow. Instead of discussing it, he threw his tablets out of the toilet window and they were found by our 7 year old grandson.
Thank you so much for sharing @Grannie G What do you think could have helped both situations?
 

milrose2021

Registered User
Jul 7, 2021
10
0
As a PWD I use a daily dosage dispenser filled by by partner. He has to check twice daily that I have taken my tablets. The fact the dispenser has the day, and am or pm on each aperture, is mostly lost on me. Apparently yesterday I didn't eat as I thought I had - so even though I can write a post, you can see that this subject really is the minefield you suggest @milrose2021. Best wishes for your research
@Dunroamin thank you so much for sharing. This was something that I have heard from our research participants previously. I wondered what your thoughts are on what would make it better for you with regards to managing medications?
 

milrose2021

Registered User
Jul 7, 2021
10
0
Before my mum went into residential care, she had a dosette box but it wasn't any help as her sense of time went a bit bananas quite early on. She had no idea what day it was or whether it was morning, afternoon or evening. It really needs another person to deal with medication in many cases and can be quite dangerous to have medication around at all for someone with dementia living alone due to risk of overdose. Prompts didn't work for mum as she would immediately forget or get distracted. Good luck with the research @milrose2021
Thank you @lemonbalm for sharing your experience. I really do appreciate it.
 

milrose2021

Registered User
Jul 7, 2021
10
0
My mother was a very fit and healthy 90 year old living alone, when her dementia really took hold and she became muddled with her medication. Fortunately nothing she took was critical to her well being as she became very confused about it all. She wasn’t sure what to take and when, not helped by being convinced her neighbours were stealing them. In the end she had a meltdown in her gp’s surgery as she thought they’d deliberately given her the wrong drugs. That led to the suggestion of a Dossette box. That didn’t work, mum had very poor eyesight and couldn’t see the compartments properly. She also felt it a deliberate attempt to upset her. The gp decided to stop all mum’s medication at that point, obviously not something that could have been done if it was essential. Shortly afterwards she went into care and her blood pressure tablets have been reinstated. Mum was very adverse to having any help, so I’m not sure having someone come in to give them to her would have worked.
@Sarasa What the GP did was very interesting and rather brave! There is now a move towards 'deprescribing' within the health system and it seems like this was needed at that time. Perhaps this could be a plausible area of research. Thank you for sharing.
 

milrose2021

Registered User
Jul 7, 2021
10
0
Coming from a different angle, I sometimes wonder how someone with dementia copes with the constantly changing appearance of tablets now that pharmacies obtain their stocks from wherever they can. I take four tablets daily and my repeat prescriptions come in different sizes, shapes and colours. The same meds can be really small oval tablets that I struggle to handle or large round ones. Some are packed 7 to a sheet while others come in 14s with the days of the week printed on the back of the foil, making it easier to keep track. I often have to double check that I am taking the correct meds. It must be so confusing to someone who is struggling with understanding and/or memory problems.

In relation to the dosett boxes The Banjoman struggled with them as (as far as I remember them) the days of the week etc. were printed on the front but not on the back so he was completely stumped as to which one to open because his loss of physical dexterity meant he opened them from the paper side. The only way I could get him to take tablets in the right order was to write the numbers 1 to ….whatever, on the back of each compartment in bold felt tip then phone him up at the time of day to take them and talk him through opening the correctly numbered compartment and hope that he then actually managed to swallow the blasted tablet without putting it down somewhere, knocking it onto the floor or generally mislaying and forgetting to take it. With antibiotics 4x a day it was a nightmare.
By this stage of LBD he was using a fixed line phone because he was forever losing, misplacing and forgetting to put a handset back on the base to recharge, consequently the phone was in the living room and the dosett box in the kitchen otherwise he mislaid the dosett box. None of it was easy either for him or me!
@Banjomansmate You raise a couple of really important points. The first around the appearance of medications that some of us tried to explore further and have given up for now - manufacturers, supply chain etc that those who hold the purse strings do not see a need to change. The second around the design of dosette boxes - some just have not considered the needs of those who are using it. I wondered whether you were given any advice about alternative ways of managing medications, and if so, whether they were at all helpful? If not, what would be useful?
 

milrose2021

Registered User
Jul 7, 2021
10
0
As the PWD progresses, medication goes from, collection from chemist as and when required, to dosett boxes, supplied in weekly/monthly quantities often delivered by chemist. Then to Carer visits twice or more times a day to ensure the correct medication is actually taken. Medication may at this stage be locked up to prevent the PWD interfering with it, either taking excess, or throwing away!
Regular medication reviews should take place, by the GP, to remove unnessary tablets. Statins taken by 80-90 year olds are not really going to have any realistic effect, for example.

Bod
Thank you, @Bod for sharing. It sounds like regular medication reviews, that should happen at least yearly, did not happen. I wondered whether you would trust another healthcare professional e.g. pharmacist working in the GP setting or community pharmacists to conduct medication reviews.
 

milrose2021

Registered User
Jul 7, 2021
10
0
We had two PWD at home with different presentations/issues.
MIL had dosset boxes for years but they didn't work too well as she was not orientated to days. We tried prompts but she would say that she had taken them and would argue that the days were wrong or that she had her own system of days. We found months worth of boxes hidden all over the house. We then tried an electronic dispenser for her but she was still insisting that it was wrong/ had given her them twice /she had already taken them and even went into kitchen to take them and put them in the bin! This went on for years. It is only now she is in a Nursing Home that she takes them daily. In total we had issues with her and medication for about 10 years.
FIL got mixed up with his medication as it changed monthly after warfarin blood tests - the more it altered the worse it got. We got the warfarin changed to Rivaroxaban and got dosset boxes. They didn't work too well so we got him an electronic dispenser which he loved, he always did like a gadget. He had his electronic box about 2 years before MIL and for 4 years in total. She got the tablets out for him everyday and he took them no problem. So even though she was used to the dispenser for her husband and continued to give him his tablets everyday until he went into care ( 6 months before her) she never engaged with it for herself.
I agree about regular reviews and removal of unnecessary medication - we also got everything to 'once a day' to minimise the battles with MIL but it still didn't work.
@thistlejak You highlighted a really important point of individuality - one size does not fit all. Thank you so much for sharing.
 

milrose2021

Registered User
Jul 7, 2021
10
0
Hello @milrose2021

In the earlier pre diagnosis days of my mother`s dementia, because she was a person who hardly ever took pharma drugs she forgot to renew her prescriptions.

When I consulted her GP about my concerns for her behaviour she hadn`t seen him for 2 years, nor had she received repeat prescriptions for Thyroxine which I believe can affect memory if too low.

My mother lived alone after diagnosis and was given a dosette box with her medication placed by the pharmacy for each day of the week.

As the dementia progressed, my mother was confused by an empty space so proceeded to share all her medication between all the days so that every space was filled.

My husband who lived with me, found some of his medication difficult to swallow. Instead of discussing it, he threw his tablets out of the toilet window and they were found by our 7 year old grandson.
Thank you so much for sharing @Grannie G What do you think could have helped both situations?
 

milrose2021

Registered User
Jul 7, 2021
10
0
We use a dosset box marked clearly with the days of the week. Mum's med are put in every lunchtime, the box is put in an obscure place near the phone and then I call her every morning and reminder her that her tablets need to be taken.
Mum is considered to be in the mild stages but the reality is, she has little to no, short term memory.
The emotional aspect of prompting your mum to take her medication cannot be underestimated. Thank you for sharing @My Mum's Daughter
 

Banjomansmate

Registered User
Jan 13, 2019
3,079
0
Dorset
@Banjomansmate You raise a couple of really important points. The first around the appearance of medications that some of us tried to explore further and have given up for now - manufacturers, supply chain etc that those who hold the purse strings do not see a need to change. The second around the design of dosette boxes - some just have not considered the needs of those who are using it. I wondered whether you were given any advice about alternative ways of managing medications, and if so, whether they were at all helpful? If not, what would be useful?
I had to fight to get his medication put into dosset boxes to make it safer for him and easier for me to supervise at the end of the phone. There was certainly no support there until it was decided he needed carer visits after discharge from a stay in hospital. Even that wasn’t much help if their visits didn’t coincide with when tablets were due to be taken - back to the problem of taking antibiotics 4x daily again! They would only dish them out of the packets with the pharmacy label and dosage on them.
I’m not sure that there is an answer and to be honest I’m just glad I no longer have to deal with it all.