Author: Peter

Janet’s information piece

Progress with new Alzheimer’s drug lecanemab

In top-line results from a phase 3 clinical trial called Clarity AD, lecanemab has been shown to slow down the decline in thinking and memory skills in people living with early Alzheimer’s disease by 27%. 

• Lecanemab is a drug that targets amyloid protein build-ups in the brains of people living with Alzheimer’s disease, marking them to be cleared away by the brain’s immune system. 
• Clearing away these amyloid protein build-ups has been long explored as a potential way of slowing down how quickly a person with Alzheimer’s disease’s memory and thinking skills get worse – but clinical trials have struggled to show any beneficial effects on symptoms in the past. 
• This news represents a potentially game-changing step towards treatments that can slow down the progression of Alzheimer’s disease in the UK.

The trails will continue. Careful screening and targeting of suitable people is needed and there are some concerns about side effects. The NHS will await clearance before the treatment is offered to patients.

Member updates

Support

A carer said her dad seems to have perked up. He has been given meds so he doesn’t get up so much in the night. Her Mum has good and bad days – mainly not wanting extra support. She gets irritable with him and it’s now more difficult bathing and dressing him. It’s a lot to come to terms with and it’s taking its toll on her. Her mum is concerned at the idea of getting someone in. She thinks maybe if social services come in they will take him away. She believes it’s her duty to take care of him. Tatiana said social services are there to help and work together to support them both. If something happens to her mum it’s important to have something in place. Try it for a while and make decisions from there. Have an assessment list.

Another carers said she can understand what she’s up against. Her mum isn’t 100% happy with her help, but it’s for her own benefit. Janet said you can make suggestions. Some people don’t make a decision until there’s a crisis. Volcare was recommended by a third carer who finds them excellent.

Motivation

A male carer tries to motivate his wife who is in the early stage of dementia. She has had a sleep monitor and they are waiting for the results.

It’s cold out there

A daughter has had a tricky week with her mum turning off the radiators. She lives alone and is afraid that she will go to prison if she can’t pay the energy bills. It’s like a fridge in her home.

Safeguarding

Another carer said her step-dad has no central heating, only free standing oil heaters with trailing cables. She is trying to influence him to go into assisted living. His sons are prime carers, but it’s a limbo situation. He is very isolated. Bluebird care comes three times a week to prepare a meal, wash up and put the washing on but she doesn’t know about other days. Janet said that if it is a safeguarding issue she should speak to the sons about it. Tatiana suggested discussing options with social services, to speak to Brian and support him in his decisions.

Gyda read: “A partridge in a pear tree”:

Gyda’s page

Next meeting 9th January 2023.

Notices

• Janet introduced and spoke about the upcoming Self Care Workshop.

Member updates

New members, old problems

A new member of the group supports her brother in Australia. He has limited support there.

Another new member  cares for her mother who is living in sheltered accommodation in Eltham. Her mother has been independent, but is now worried and scared making excuses not to go to the communal area. She is also not drinking enough. A regular member spoke about his wife and the struggle to keep her hydrated. He suggest suggested fruits, ice cream and jelly. Janet suggested there may be someone in the home that could encourage her mum and to contact Social Services to do an assessment. Janet said her thirst receptors may be affected. People can get to a point where they feel unsafe, thinking “If I stay in can be safe”. Another carer had to go with her mum to the Queen Elizabeth hospital recently as she had become dehydrated.

Here is a link to Good Hydration and how to ensure that someone is not becoming dehydrated. The Dementia UK website has lots more useful information.

Not taking medication

A sister-in-law spoke about the person she cared for refusing to take her meds as she had read the side effects on the leaflet.They are trying to contact Monica Crugel (at the Memory Clinic) for a second opinion. They have an appointment in January. The person with dementia hasn’t taken her meds for about three weeks now. Tatiana said if they were worried about the situation they should ask to speak to the doctor again and put it in writing. Ask for a mental capacity assessment and what needs to be done – copy it all over to Monica. Janet recommended asking for a written summary of the meeting.

Feeling low

The next speaker said her dad is feeling down at the moment and has low energy. He is not responding to the usual things that they do. He doesn’t go out as much.  People do come to see him, but it upsets him and he gets aggressive and says he’s going to bed. Another carer said unexpected guests can unsettle her mum too. She has a friend who comes to see her three times a week. Janet asked if he was on antidepressants as he may need a low dose.

Mobility

The next conversation covered a mum who has mobility issues and how she shakes if she opens the front door. The son said he has good and bad days, but focuses on the good.

Time for a holiday

Finally we were updated about a mum who is in a care home after a lot of problems. Sadly her mum no longer recognises her. The daughter is going on holiday for the first time in four years.

Next meeting 12th December 2022.

Notices

• Janet talked about Good Hydration and how to ensure that someone is not becoming dehydrated. The Dementia UK website has lots more useful information.

Member updates

Problem carers

A mum is a bit negative and anxious when going out. Her daughter has changed tactics, not telling mum when they are going to go out until just before, when she’ll say “get your shoes and cardigan on”. They are having problems with carers that don’t turn up at the arranged time, not talking to her mum, and not staying to the arranged time. Today’s carers were quite brisk and loud speaking. The daughter sometimes will be working upstairs and can hear what’s going on – sometimes the carers only stay for 3 or 4 minutes. There is a picture calendar on the wall so that carers can talk to mum about it – some do talk to mum and some do not do anything. Janet asked if they log in and out in a book? There is a book for any issues and an on-line system, but it’s difficult to get on and it’s kicks you out. Tatiana recommended collecting evidence and get more understanding of the system.  When do they record? Who’s checking? Does it work as it should? It is important for management to know how the carers should be talking to the people they are for.

Time for help – but what sort?

A sister went to the Memory Clinic and has been given Risperidone medication [you may read more about antipsychotic drugs here]. She said she doesn’t want to be “spaced out”. She has cut the tablets in half and today she said she only has one weeks supply. She rang tonight saying she’s too tired and has thrown the box away. The brother is going round tomorrow to sort it all out, he said it’s approaching the time when she will need someone to come in to help. She’s been burning food again, but doesn’t know how often this is happening. Another carer had the fire brigade up to her mum’s house to assess and fit appropriate detectors and alarms [you may read about the London Fire Brigade’s home fire safety visits here]. The brother wants to put in a camera, but his sister won’t have it. Janet said some action needs to be taken as these are important tablets and you can’t just stop and start taking them. Janet recommended contacting the head person at the Oxleas memory clinic (Monica Crugel) and ask for another opinion.

Going for a walk

A carer has had a very stressful time as her husband went walk-about on Monday, leaving the front door open. He went out in slippers and no coat. It came up on the new Ring doorbell – it’s stressful every time her phone goes off. He is mobile and active, but not steady on his feet. The neighbour saw him go to the end of the road and back again. If it happens again she may have to give up work and set up a rota. Tatiana asked there is it the same or different times when he went out? Is he looking for some stimulation? Maybe more interaction when he’s on his own. His wife said there wasn’t a pattern. Pre-Covid he used to walk a lot. Janet suggested speaking to Maria Jenkins (Volcare) they provide half a day or one day once a fortnight. They provide a free service (Greenwich and Bexley).

Gyda read: “Love soothes all ruffles”:

Gyda’s page

You might empathise with the author of the popular blog:

Midsummer Madness by Georgina Grant

Next meeting 14th November 2022.