Support groups for relatives & friends

[DemAC]

Hello everyone.

I work in a dementia specialist care home. Part of my job involves supporting the relatives of our residents, which I feel is a very important role.

I currently run a monthly support group which involves a guest speaker covering a variety of topics that helps to support our resident's spouse, partner, children and friends.

I have exhausted my list of contacts and ideas and I am looking for new avenues. To give you an idea, I have run the following sessions:

- Admiral nurse (x2 sessions) to signpost to local services and internal support in the home
- dementia medical details talk from specialist nurse, exploring different types, what happens to the brain, how it affects you etc
- dementia friends workshop run by Alzheimer's society
- legal matters talk with local solicitors and funeral directors e.g. funeral plans, powers of attorney, next of kin, wills etc
- Carers UK support group sharing experiences and 'getting it off your chest'.
- Carers UK focusing on putting a parent into care and another session around putting a spouse into care - feelings of guilt and coping with living alone
- Pain Management and how to recognise signs of pain in a loved one with dementia, having a go at using the tools we use in the care home to document and assess pain
- Mental Health Act & Mental Capacity Act, exploring deprivation of liberty safeguards too
-The importance of life story books when caring for someone with dementia, content, how it is useful and benefits the person
- Effective communication - what colours, senses and forms of communication work with those who are unable to verbalise, showing there are lots of ways to still enjoy each other's company
- Safeguarding adults, how to recognise signs of abuse and to protect your loved one as well as yourself
- Dementia & depression
- Funding long term care and the new care act

I am looking for some new ideas - what do you as a relative or friend of someone with dementia wish you knew/would like to know? We invite people from the local community so it's not specifically tailored to those living in care.

Thank you!

 

[loveahug]

I find it difficult to get the right information from the right person in my mother's care home. A session on the protocols they follow, the chain of command within the home and how they arrive at decisions to call doctors or ambulances would be really helpful. Also maybe run catch up sessions for relatives of newcomers?

It sounds like you're doing a stupendous job, I wish more facilities would offer the support you are providing, well done

 

[Grannie G]

This sounds wonderful. Well done.

Can I suggest something to benefit carers, outlets to help with isolation, stress, tiredness. Perhaps a reflexologist, getting people in to offer manicures, pedicures things to help carers feel they are important too.

 

[Saffie]

Your home sounds great with all the information you have mentioned being available.
May I also suggest mentioning Talking Point.
It's where just about all of my support came from!

 

[Eddy]

My wife want ewen go and she gets rude.Have my hands full with her.

I find it difficult to get the right information from the right person in my mother's care home. A session on the protocols they follow, the chain of command within the home and how they arrive at decisions to call doctors or ambulances would be really helpful. Also maybe run catch up sessions for relatives of newcomers?

It sounds like you're doing a stupendous job, I wish more facilities would offer the support you are providing, well done

 

[CollegeGirl]

How about a session on Compassionate Communication? We have a post here somewhere on this subject. I'm sure someone will show you where it is. It can be very difficult to follow at times but I know it's helped lots of carers on TP.

I wonder whether you might be able to show some of Teepa Snow's videos at your groups? (If you Google her, you'll see that she has lots of stuff on You Tube.). She has lots of interesting and practical ideas that might be of use to some carers, and she's quite entertaining, too.

Music helps a lot of people with dementia - there is a wonderful video somewhere here about the effect listening to music has on one particular chap who simply comes alive when he listens to his favourite music through his headphones. Perhaps show carers how they can download music from the internet onto ipods, MP3 players and the like, or make up compilation CDs to play to their loved ones.

Keep up the good work, you are offering such a valuable service to the carers in your group. I'm sure that even if you run out of ideas, they will still enjoy the get-together to offer support to each other. In fact, perhaps you could make that a regular session with tea, cake and a chin wag!

 

[Cat27]

Link to the compassionate caring thread.

http://forum.alzheimers.org.uk/show...ionate-Communication-with-the-Memory-Impaired

 

[Izzy]

College Girl mentioned music. There's good advice for carers on this site.

http://www.playlistforlife.org.uk/#2649

I'll put the links to the two videos she mentioned in her in a minute.

Edit - here we are -

http://youtu.be/NKDXuCE7LeQ

http://youtu.be/oTDhfo7kS6k

 

[Canadian Joanne]

In the support group which I facilitate (offered by my local Alzheimer Society) at least half of our meetings consist od open meetings. Each member updates on their situation and there is general conversation about the points brought up. Very often advice is asked for and the other members offer up their own takes on situation. I find that open meetings are the most popular.

 

[CollegeGirl]

Thank you Cat and Izzy for providing the links!

 

[fizzie]

What a great idea
Carers Cafes - lifelines - if you have some in your area
I think an open session is a fantastic idea - updating on who is who, maybe a break the ice 10 minutes , supporting each other and swapping local info an tips

 

[Amy in the US]

I'm in the States, so we have differences with our legal and medical systems, but of course everything else is the same.

I'm currently in a few different support groups and am also currently taking a workshop for caregivers. I can give you a link to the agency but could also, through a PM, put you in touch with the people who run the workshop. This is the flyer, which broadly lists the topics: http://www.coaaa.org/pdf/Caregiver/CaregiverToolbox_Sessions_Columbus_2015.pdf.

We get handouts on the topic each week, a lecture, a question and answer session, and also a printed resource guide.

My favorite practical session was learning how to help someone stand up from a seated position SAFELY, and also how to correctly use a wheelchair. That's honestly the best piece of practical advice EVER and I had no idea how to do it.

Next week's lecture is caregiver burnout, which I don't see on your list, and then we get a lecture on dealing with difficult family members (both the person with dementia and/or other family members--we sure see a lot of that here on TP).

Most of my support groups are peer-to-peer and are just for venting/sharing/offering support. But one of my groups, twice a month, is led by an area neurologist whose practise is limited to dementia patients in care homes/hospitals. He gives us case studies on patients and general information/education about all kinds of neurological diseases. Then he opens the floor up for questions from us. It is amazing and I learn more from him in 90 minutes than I do from WEEKS of research on my own.

I also think you could do focused sessions on some of the issues common to many patients with dementia: incontinence, delusions, hallucinations, swallowing trouble, sundowning, hoarding/hiding objects, sleep disturbances, medication problems, et cetera. I think a lot of us have to learn all this stuff piecemeal as it comes up with our relatives and I, for one, prefer to know what the challenges are likely to be, before they happen. The recognizing pain/pain management session sounds brilliant; so many of our relatives with dementia have other medical issues/chronic pain.

 

[Susannah10]

Hi I have had to put my husband in a Care Home and I will never forgive myself. I know that he now needs 1 to 1 and 2 carers to look after him but it breaks my heart to leave him there. I do go for 3 hours every day to help groom him as the staff cannot get near him because of violence. I am feeling the loneliness even though I have friends and it is difficult to cope with all the work at home as I am still working. Is anyone else struggling and had anyone any tips for coping.

 

[jennifer1967]

Hi I have had to put my husband in a Care Home and I will never forgive myself. I know that he now needs 1 to 1 and 2 carers to look after him but it breaks my heart to leave him there. I do go for 3 hours every day to help groom him as the staff cannot get near him because of violence. I am feeling the loneliness even though I have friends and it is difficult to cope with all the work at home as I am still working. Is anyone else struggling and had anyone any tips for coping.

this is a very old thread 2015 it might be worthwhile for you to post your own thread in caring for partner with dementia. you will get more replies and there are other members that have been through this