Category: Carers Group

Member updates

Care homes

A mum is doing well in their care home. She went out with a group to a pub but unfortunately it did not go well as her Mum kept wanting to go home (a disaster!!) –  but at least the daughter tried. 

There was an investigation into the care provided by the mum’s previous care home. There was no feedback and the daughter raised a formal complaint. The care home upheld the complaint. Tatiana asked if the police were informed and what course of action they took. The Queen Elizabeth Hospital listened to the daughter’s complaint about their care and apologised. The daughter now has a chain of command of who to complain to. She is going to go back to the Safeguarding Team to find out how her mum sustained the injury.

Improvement

Another mum in a care home is moving from a nursing care floor to the dementia floor, as she has improved. She made her way out of the home early one morning undetected. Thankfully, she was found by someone coming in. She didn’t remember anything about it. All was ok. She has got more active. It’s a very good care home. Safeguarding was done.

Reflections is worldwide

A brother in Australia (yes, Australia) goes out once a week with a carer. They talk every week. He is lucid some weeks and others not. It’s his birthday in 6 weeks and the sister asked for suggestions. The group came up with car books/manuals, as he was very keen on cars.

Making memories

A mum doesn’t go out anymore and the son does not get out much. Her communication has gone now but sometimes he gets a surprise. “Every so often you are reminded that they are still in there”. The son has 3 respite hours on Wednesday He takes every day as it comes. He is building memories with his mum.

The next meeting will be on 13th November 2023.

Member updates

Another good care home

A mum has been in a home for 3 months now. She has been given a drug to stop hallucinations, wandering etc. There is Covid in the home. Visits are allowed but they have to wear masks again. Mum is good in herself. She has been on days out (Brighton, Greenwich Park) and is having manicures). Mum is eating and drinking ok and has put on weight. She is being encouraged to walk with her frame. Her daughter is feeling much better. She visits mum 2/3 times a week and has been on holiday too.

The Safeguarding Team came to see mum to do a DOLS ( Deprivation of Liberty Safeguarding) assessment. Tatiana explained about safeguarding and what the assessment meant. The assessment went well with her Mum telling the assessor she liked it in the home. The NICE safeguarding guidance is here.

Care home Covid guidance

Janet advised group members to look at Current Covid guidelines for care homes. The guidance states: “… there should not be any restrictions on visits out for individuals who are not symptomatic or who have not tested positive in any circumstance.” See more here.

Contentment

A husband said his wife is physically ok and quite content. She does have phases of agitation. She was experiencing difficulty going upstairs, but seems to have come through that and now it’s coming down that is more of a challenge. In the last 8 months there has been a gradual decline. Donna, the Advanced Dementia Nurse, came once. She did say she would return but has yet to do so. The husband felt it hadn’t been necessary to see her and said he would contact her if he felt he needed to. He has a live in carer when he goes on holiday and someone from Volcare on Fridays so he gets a regular break. He said they have had a few volunteers from them over the years and they have all been good.

Weight loss

A wife has put her husband on a special milkshake 3 times a day as he has lost 10 percent of his body weight. She has decisions to make regarding his future care. She doesn’t want to put him in a nursing home though feels he may need to go into a hospice due to his other health issues. Tatiana recommended asking for the criteria and eligibility for a hospice and medical professional advice. She also suggested the wife should look at nursing home options and go and visit them. Janet recommended contacting Donna Godfrey, the Advanced dementia Nurse Start for advice and start investigating now – ask questions and options and what she would like to do.

The wife has concerns about her husband falling out of bed. Another member suggested a bolster. He will send a link for the one he got from Amazon. Tatiana suggested she should also contact social services, as they could make recommendations. 

The next meeting will be on 16th October 2023.

Member updates

A brilliant care home

Our first speaker has had a good few weeks. The mum’s care home is brilliant. Mum has joined a little group playing cards in the mornings. A nurse comes to see to her and she has put on a little weight. The daughter has also had a reply from Queen Elizabeth hospital’s head of nursing admitting that they didn’t do very well. She believes that QE contributed to her mum not going home and she is contemplating her next steps. Her mum is in good spirits. The daughter’s heart is warmed by the care that the staff give her mum. She hasn’t taken her out of the home yet. Mum is now walking with a frame. One thing the daughter was especially touched by was a personal note they had written to her Mum, which her daughter had found in her Mum’s hand bag. The note told her not to worry and that she was loved. No one at the group meeting had ever heard of anything like this before.

Language problems

Another carer spoke of her brother. He is up and down and down at the moment. When she calls him for a chat. He can’t recall the words he wants to use and feels he’s not in control of his life. He has a history of depression. She said it’s very hard as he’s used to being active. He was always strict about how things are done. His language is better when they talk about memories. He spends a lot of time in his room and tires quickly. The care home said they were engaging him in activities. Janet asked if are they engaging him in outdoor activities. The sister reported they were but a volunteer told her brother he was doing things wrong so he decided not to join in anymore. Janet suggested feedback be given to the home as maybe the volunteer was not aware they should not correct someone unless it was an issue of safety.

Sisters

A sister has had lots of physical tests and is waiting for the results. She had a PET scan of her throat and stomach. Cancer cells were found. The brother finds managing things very tiring. His other sister is here on a visit. This is adding to the stress as she is contradicting him. She went with them to the Memory Clinic and he was embarrassed because she was challenging what they were saying. A carer comes every evening to make sure the sister has eaten and taken her meds. The brother is sorting out Lasting Power of Attorney (LPA). He feels his sister is different and very quiet – the meds seemed to have calmed her down. His sister with dementia is having a 2nd surgery tomorrow. He and his wife will be supporting her.It is all very stressful.

Urgent problems

A daughter said life is hectic. Her dad has gone downhill. He’s not allowing her mum to rest in the day. They can’t cope any more. Donna, the Advanced Dementia Nurse, put in a referral and they have a new social worker. They are awaiting the outcome of the review and waiting for a placement in a home as they now feel he needs to be in a care home. Evening and night time is a problem and dad is getting nasty and violent with them. He is baring his teeth at them. They can’t even go out for long as dad won’t settle. He keeps going upstairs and he’s dodgy on his legs. He misjudges how to get up off a chair and also bumps into door frames. He is restless and doesn’t recognise his home anymore. He is going back to his childhood. This has become more frequent in the last few weeks. Her mum’s health isn’t brilliant. She puts off making decisions about her husband. The dad can pick up a cup and drink and eat ok. Vertigo and balance are not good and he says he wants to die if he can’t get his own way. Her mum has tremors and can’t carry anything. She and her brother have been supporting their Mum but it has become too much lately, they both work and it is affecting their ability to do their jobs. Tatiana and Janet said that as things had rapidly changed they should find emergency respite now, with a view to permanent placement. They need to write down all the things that have got worse, say they cannot deal with this and say he needs to be found a care home placement asap.

The next meeting will be on 4th September.

Member updates

Settled in a care home

A carer said her mum is now more settled in her care home. She is less anxious and has made friends. The daughter has been advised she can start to take her mum, but she is reluctant in case she has a problem getting her back. They have been out in the garden and the home also has a dog. They deal with the residents in a really professional way. Mum has been there since the beginning of May.

Janet suggested a short outing maybe with a member of staff to support them. Tatiana said it’s common for care homes to advise residents stay in initially and agreed that a member of staff to come with them when they go out would be a good idea. The daughter has meetings about her mum’s previous care home and the Queen Elizabeth hospital regarding issues while her mum was there. Tatiana explained internal systems for recording information when you go into hospital. Janet said it was good that her GP saw her mum just before she went into hospital as they would have been aware of her mum’s condition at that time.

Mounting problems

The sister of a carer has had a biopsy and they found early stage cancer. They have to go up to Guy’s hospital on Thursday. The sister has help with her Doset box  in the evenings. She forgot to take her tablets Monday and took two lots together – nothing happened fortunately. She wants her brother to change her phone as she can’t operate it. She doesn’t want one made by a male! The brother thinks she isn’t sleeping and they may have to arrange more care. Janet said a fitness tracker might help, as they can track sleep data via an app. The sister forgets that she’s eaten – some days it’s ok and some it’s not.

New

A new group member said her dad is 83 with dementia and mum 80 with mobility issues and diabetes. They live with her brother and they both care for them. They have carers in the morning, lunch time and evening. As well as their full-time jobs they care for the parents at the weekends. Dad’s needs are increasing. His short term memory is very bad. Finding support everyday is difficult. They were fortunate to arrange emergency respite care for her dad but need more in September. Another carers recommended booking early rather than later.  Janet asked if she had contacted the Carers Centre. Donna, the dementia nurse, is supporting them. Tatiana – suggested trying to organise the September respite in the middle of July.

A good care home

A carer said she is now is in a good place. Her mum has been in a care home for 7 weeks and is really happy. She’s eating, drinking, joining the choir and watching the activities. Yesterday the daughter took her back to her home for tea and cakes and her mum was quite happy to go back to the home for her tea. The residents are going on a day trip to Brighton The daughter was really worried about mum going into the home and it was a hard decision to make, but her mum had to be safe. It’s all worked out well and she feels she’s in a really good place at the moment. The daughter has been away for a holiday too.

Seeking out a care home

A wife had made no progress finding her husband the right care home. They don’t qualify for any help. They have been to look at another care home and the husband spent the day there. He doesn’t understand why he can’t go back to his home and he doesn’t want to be in a care home.

Tatiana asked if she had spoken to Social Services? Even self funding entitles you to have assessment for the needs of the person with dementia. She recommended giving it another try. It’s their duty of care and legal responsibility to find the best type of placement. Professionals can assess the needs and help with decision making. Kirsty (Older Peoples’ Commissioning Manager for Royal Greenwich) says Social Services were not experiencing backlogs.

Fragility

A daughter said her dad is more unsteady on his feet and stumbles. He can be very active or asleep. Janet asked if he being monitored. The daughter said the frailty team are monitoring him. He has carers come to bath him He will refuse sometimes according to his mood. Due to symptoms described by the carer Janet said it is possible he may have Parkinson’s. She suggested the family investigate further. Parkinson’s UK list early signs of Parkinson’s.

Next meeting will be on 14th August.

Member updates

Moving into a care home

A carer’s mum is now in Riverlee Care Home. She is setting in and doing well. They had a lovely social worker assigned to them and it was decided, due to mobility issues, mum would need nursing care. Another carer had given her a list of homes covering Bromley, Bexley and Greenwich. The first carer said it’s a case of “do it yourself really”.

Meltdown after 1 hour

A daughter carer is feeling more positive now the family are connected to social services. Prior to that they had a Mothers Day outing incident which had shaken everyone up. The daughter decided that she needed to avoid situations which escalated a pattern of behaviour. The family decided, once her mum had given consent, to contact social services. Now carers come in 3 times a week to help with bathing. “It lifts a weight off your shoulders and you feel you’re not alone”. Tatiana recommended asking social services for a befriending service. Janet suggested contacting Volcare Greenwich for their carers support volunteers (a free service) 020 8302 0198 for care in your own home. Another carer said she uses this service and highly recommended it. Miss Mardles companions were also recommended.

Learning opportunities

BLG Mind provide a selection of services, including a course for carers. Janet suggested interested carers put their name on the course waiting list (call 020 3198 2222). You can find out more here.

Moving into another care home

A wife said she couldn’t keep her husband safe at home. While he doesn’t make a fuss, he was unhappy in the care home where he was having a trial stay. She spoke with the home about his needs and they said he needs nursing care because of his mobility and she would need to find somewhere else for him. At the present she is funding his care. Janet said how difficult it is making life changing decisions. A carer said it’s very stressful making decisions, but it was for her mum’s safety she needed to move into a home. Now they have more quality time together.

Tatiana said the husband is entitled to an assessment from social services to assess what type of home would best support his needs. If someone didn’t want social services to assess, they can go and look themselves and the home would need to assess his needs. The wife worries about her husband’s mobility when he is in care. Tatiana recommended expressing the need for his mobility to be considered as part of the assessment. He should have a care plan that documents his needs and she, as his wife, should be consulted. It will be his home so it’s important to express all concerns and they should work with you.

Increasing issues

A carer’s sister is having her appendix out tomorrow. She’s been having some pain and he felt she has been “making a bit of a nuisance of herself”. She has been referred back to the Memory Clinic. Her brain scan hasn’t happened yet. She now has someone to give her meds at night. The brother is taking all of this hard. Tomorrow the op and after that what?  Sometimes she is bright as a button and other times depressed and quiet. Janet said Admiral Nurses will be working in the borough, but have not started yet, so she will let him have the national number for Admiral nurses (details here)

The next meeting will be on 10th July.

Innovations from the Alzheimer’s Society Innovation Hub

Eargym hearing app for hearing health checks.

Hearing loss isn’t just for older people. From understanding your hearing age, to strengthening your hearing skills with immersive games – Eargym aims to make better hearing accessible for all.

Hearing loss and dementia related. Hearing loss is correlated with mild cognitive impairment and dementia. Research shows that even mild hearing loss doubles the risk of dementia (see the RNI:D article here), while moderate hearing loss triples the risk, and severe hearing loss can increase the risk up to five times. To reduce the risks of hearing loss and dementia, it is important to look after your hearing and health and treat even mild hearing difficulties. 

The Alzheimer’s Society suggests the following ways to support someone with hearing loss and dementia: 

• Ensuring regular hearing health checks 
• Wearing hearing aids and treating the hearing loss as directed by an audiologist
• Learning to communicate with visual cues, prompts, gestures and expressions

Sibstar a debit card for people with dementia.

The Alzheimer’s Society say Sibstar is the first, highly secure debit card and app designed to help families living with dementia to safely manage their daily spending. Amongst other things, the app gives you the ability to set daily and monthly spending limits, switch cashpoint, and online it adapts as the needs of individual customers change, delivering financial independence and enabling people with dementia to continue living life the way they choose. The costs are: £4.99 setup, £4.99 a month to run the app and 99p per withdrawal.

New and improved Jelly drops

Jelly Drops have launched a new version of their sugar-free sweet designed to help those with dementia who struggle to hydrate! They claim to be tastier, easier to eat & with 60% less plastic packaging. New Jelly Drops still contain 95% water with added electrolytes to support hydration. You can find out more here.

Member updates

Moving into a care home

A daughter gave an update on her mum. She is still in a care home, but she seems more like her old self. The daughter is seeing a financial advisor and is getting a house valuation. The social worker is still chasing her to move her Mum into a permanent location. However there are no spaces available that will meet her mum’s needs. Tatiana recommended asking to speak to the social worker’s manager to discuss the situation and next steps.

This article here suggests the local authority will fund the first six weeks of a temporary care home placement, where a person needs to be moved out of a hospital. If a suitable permanent place can not be found within six weeks, discussion will need to be had regarding next steps. This may mean taking on the payment of the care home place until such time as a permanent place is found.

Another move

Another daughter said her mum has had Covid in Queen Elizabeth hospital, but tested negative today. She is going to Charlton Park home tomorrow (04/04/23). She has a social worker who is learning as she goes along, but they are on quite good terms. The daughter is trying to get a financial assessment done. She has been told her mum has to have 24 hour care. She says she has got over the guilt of placing her mum in care. She said she had been told there would be a panel to discuss her situation but didn’t know what this involved. Tatiana explained the process of going to the panel to decide what happens – there is shared information from all those involved in deciding her mum’s care and the carer should be invited to give their input too. Care homes have to work with carers in placing people in the right place.

More care needed

A new member spoke about caring for her husband. They have a supportive family, but she now needs a bit more help. Her husband has planned surgery in early May and lots of appointments. He has hearing issues and had trouble with his hearing aid. – they had issues with Lewisham hospital who said they couldn’t see him for a few weeks. As his wife knew how loss of hearing affected her husband, they ended up going privately to Devika James on Lee High Road – they were very pleased with their service. The husband is now more vulnerable than he was and needs more help and is more reliant on her. She takes time out to meet a friend once a month. The husband has been referred to groups, Live well with dementia, and Cognitive stimulation group at Oxleas, plus another group at Age exchange.

Waiting lists

A sister has become more belligerent and uses colourful language. The Memory Clinic said the family will have to wait until things get really bad before they will intervene.  There are ongoing issues with her taking her meds. She is still deciding when she’s going to take them. Janet asked if is there a mental capacity test coming up. Apparently there is a 6-7 month back log, so they are waiting. Her brother was concerned about his sister saying inappropriate things when they are out, as she is prone to make personal remarks about others. This is something she never used to do. Janet advised having a discreet word with the person the comment is aimed at if he feels they heard, saying words along the lines of “I’m so sorry, my sister isn’t well ”.

Advancing symptoms

A wife has become harder to look after while the husband is away a break, as she has trouble going up the stairs. She can’t work out at times how to use her feet. Janet asked if he had considered a care home placement while he is away. He felt a respite place would throw her out of routine as it would not be familiar and she would be better at home. The husband said he has got used to how his wife is, but her daughter still finds it hard. 

The May meeting is canceled due to the coronation Bank holiday. Next meeting will be on 5th June.

About Dementia Careblazers

There is a lot of useful information on the YouTube video channel Dementia Careblazers run by Dr Natali Edmonds a psychogeriatrician (website: Careblazers.com). There are videos on many topics most of which are short. There is a free course available too, which is one and a half hours, available by providing an email address. Peter did the course and thought it was good. Be mindful, however, if you give your email address to access the free course as you will get lots of emails from Dr. E. You will need to unsubscribe, if you don’t want to receive these.

Member updates

Stability

A member’s dad continues to be stable. Lately he gets fixated on things that pop into his head. It can be challenging. At times he still believes he is at work and will ask his daughter why his meeting has not started. The daughter says “I’ll find out” rather than saying “I don’t know”, which seems to diffuse the situation. She has also been doing talking therapy at the Deborah Ubee Trust and said it helped her to order her thoughts.

Ups and downs

A brother is up and down. How he is varies from week to week. The sister mentioned a book by Oliver James on dementia Contented Dementia which she found helpful.

Coping with change

We had an update on a member’s mum, following her fall and stay in the Queen Elizabeth hospital. She is now in the Oaks Care Home, which she says is brilliant. They have sorted out her hair, nails etc. It’s only an interim placement. The daughter is having a difficult time finding a place she feels happy with for her mum that is closer to where she lives. Tatiana recommended making an unannounced visit to care homes, as well as arranged ones. Since she went into the care home, mum is a lot better, the delirium has gone, but she’s not stable enough to move out of her room.

Another mum was still in the QE. Three weeks ago her mum forgot who her daughter was. She wasn’t coping at home and had several falls. She was being found by the carer following the fall. The daughter is experiencing difficulties finding somewhere for her mum. Tatiana gave advice on different options, care packages and assessments.

A wife talked about her recent holiday with her husband. They went on holiday to Revitalise in Chigwall. Revitalise specialise in supported breaks. Everyone was very kind. They went to see The Lion King and had a trip on a narrow boat. Unfortunately her husband was taken ill while away and had to go to the local hospital. He had a chest infection and caught covid. His wife also got a sickness bug, but was allowed to stay at Revitalise until the husband was able to go home. She has decided that she needs respite, so for her next break her husband is going into care while she goes to see family.

Next meeting has been moved to 3rd April 2023 due to Easter

Member updates

A lack of understanding

A couple said things are not any easier for the person they care for. She has been to the Memory Clinic. The drug she was prescribed was only taken for 4 days. Once she read the information that came with the drug, she wouldn’t take it. She is also becoming forgetful and can use inappropriate language. Her brother is worn out by it all and is trying to step back a bit. Tatiana asked what are the medical next steps? She is being monitored, with an expected appointment in 3 months. Tatiana then asked if they had been given any recommendations and advised emailing their concerns, asking what can they do and is there another meeting planned. Janet said the person needs an mental capacity assessment and needs to be made aware of the consequences of not taking their meds. The couple think she doesn’t understand. Tatiana advised going back to the Memory Clinic consultant/ lead  professional with their concerns.

Goodbye

One of our longest standing group members came to her last meeting. Her step-father is moving to Beckenham with his son. They are looking for assisted living for him. They are also in the process of clearing the house (40 years of “junk” – he is a hoarder). She said the group has been instrumental in supporting her Mum and her step-dad.

Coping

Another carer said his mum is fairly happy at the moment and enjoys life as much as she can. He has been on a “Coping with dementia” course run by MIND. It was very good. He is thinking about moving to a ground floor flat, so that he could use a wheelchair and take his mum outside as she is largely bed bound. Janet suggested speaking to Donna Godfrey, the specialist dementia nurse, for some support and advice.

Unsafe discharge from hospital

Another carer reported her mum had a fall and is in Queen Elizabeth hospital. Her daughter is unable to visit, as she has Covid. The mum was having trouble swallowing. There was concern when the son of the carer witnessed his nan being force-fed by a member of the hospital team. When he raised it as his nan’s cheeks were full of food, the reply was, we are very busy so I need to get this done. Janet & Tatiana suggested raising this with the hospital as no matter how short of time the team are, someone with swallowing issues cannot eat any quicker. Mum is currently not mobile and the QE plan to discharge mum with a care package of 4 visits – the group thought there was an issue with this being an unsafe discharge, putting mum at risk. No one in the family can help currently and the daughter can’t help 24/7. Janet advised speaking to the dementia nurse, Kate. The daughter wants her mum to have an interim placement to see if her Mum can further recover. Tatiana asked if there is a hospital social worker involved. Not as far as the daughter knows. Tatiana felt from what was said, if the hospital were to go ahead with a discharge on Friday she considered it would be an unsafe. Tatiana advised emailing Kate and copying-in the social worker in the community who did the earlier assessment, stating if the discharge goes ahead it will be unsafe. [update: the email did the trick – the discharge team agreed to reassess mum and she has now been assigned a social worker – the daughter is very pleased]

Holiday

A wife told us she and husband  are ok. Next week they are going on a respite holiday with Revitalise, a place for people with disabilities and their carers

Feeling lucky

A new group member said he was feeling fairly lucky at the moment, given all the issues he had listened to this evening. He was interested in the course from MIND and will look into booking.

Next meeting 13th March 2023.

Janet’s information piece: Are you a “Carer”?

You are all carers. What do you think about the word “Carer”?

Janet introduced the piece by referring to the Goldster programme with Sir Muir Gray and his books Sod 60 & Sod 70 Aging Well. Sir Muir doesn’t like the word “carer”, he prefers “enabler” as he feels this is more empowering.

Janet ran some Zoom polls asking about alternative names for their role. She also asked if the carer switched rolls withe the person they looked after, would they be happy to to have someone called a “carer”. Generally members were content to be called a “carer”, but they would not like to have a “carer”.

The group discussed definitions: “Enabler” – make something possible. “Supporter” – to help someone. “Champion” – defend/fight for that person.

Language matters. We have a choice in the words we use. Often, “it’s not what you say, it’s  how someone hears it.”

A member said it depends where you are on the journey.

Another member said there’s a distinction in the language between family member carers/professional paid carers. Paid carers are not always there when something happens. Attitudes are very different.

A daughter said her mum has paid carers. Her mum would not accept having carer. However when she rephrased it to ‘helpers’ her mum was more receptive. Her mum calls her carers “lady helpers” and is happy to accept that.

Tatiana said in her experience as a social worker when referring to someone needing “a little help” rather than needing carers, this approach was usually received more positively. After all, we all need some help sometime and it normalises the situation.

A member gave her example of when she had a stroke and had to have help. She wanted it on her terms rather than waiting for them to come and she wanted to have a sense of control. In contrast, when her husband recently needed help from the Enablement Team, they arrived and said “we are not carers who do things to you, we are here to enable you to do things for yourself”. Generally having carers is often seen as having things done to you.

Member updates [I’ve returned to using the title “carer” – Peter]

When is the right time to consider a care home?

A carer said her mum has paid carers in her sheltered housing and has recently taken a downturn. She asked when do you decide to go to a care home? Who makes the decision?

Another carer said it’s difficult. Her mum wavers from week to week, but she wants to stay at home. She will make a decision when either she can’t cope with the caring role any longer, there is a clinical decision or something happens to prompt the move. As long as her mum is safe the daughter will always have her best interests are at heart.

A husband agreed the decision is very difficult. He considers his wife’s best interests and the risk factors. As long as he feels he can look after her at home he will, as his wife is more content at home. He is also aware of her thoughts and views before the dementia progressed.

The carer who raised the subject said she was concerned because her mum wants to stay in her room and lay on the bed not really doing anything.

Another carer said her mum has a friend who comes to see her 3 times a week (paid) to take her for a walk, have a cup of tea and chat. She asked if her mum was thriving where she is? Janet recommended weighing up the pros and cons. It is worth getting someone into stimulate her. Consider if her mood has changed? Chemical changes cause an in-balance in the brain and she may need antidepressants.

Tatiana asked her to consider how her mum managed in between the carers? Maybe have a discussion with social services and ask for an assessment and discuss all the options. Mum may have lost her confidence.

Sleep

A daughter was concerned about her mum sleeping more – she used to get up early and now she doesn’t. The daughter calls mum to get her up in the morning, otherwise her whole day is out of routine. She asked whether this was reasonable to wake her mum. It was felt it was a good idea to wake her at a reasonable time as otherwise it brought her distress on wondering where the daylight had gone. It also helped with keeping a routine.

Side effect of hospital stays

A wife has had a challenging time with her husband. His dementia is worse every time he comes out of hospital. He is waiting for a heart monitor and his blood pressure is creeping up. The wife is keeping an eye on it.

Keep a diary

A sister caring form a distance, keeps a diary about her brother, the things they discuss and how he is. He can get angry and frustrated as he can’t do the things he used to do. When he has a good week he is really nice.

Next meeting 13th February 2023.

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.

Next meeting 9th January 2023.