What should be in a handbook on caring for someone with dementia?

[Mark_W]

If you were given a handbook for people caring for someone with dementia, what information would you want to see included?

Alzheimer’s Society’s Publishing team have lots of resources for those caring for a person with dementia. At the moment they’re reviewing these to see what’s most useful and where they could provide more information.

Your suggestions will help them to make sure their handbook for carers provides the right information for the people using it.

So please tell us what kind of information you think we should be including.

Thanks everyone.

 

[nae sporran]

Useful websites and phone numbers for the Carers Trust and AgeUk as well as Alz Society of course. Remind people to let their GP know they are a carer and to ask them if they know about support groups in the area. We have dementia navigators in our area and our previous surgery has a coordinator for carers support services, not sure if that's everywhere, but worth advising people to ask their GP.
How about a page listed the general rules for compassionate communication and a warning not to feel guilty if you can't quite manage it every day.
Just a couple of ideas.

 

[Amethyst59]

Include where to find support. It is impossible to do it completely alone.

 

[Amethyst59]

Sorry, our replies crossed and @nae sporran has put it much better!

 

[DeMartin]

A guide to PofA and Deputyship. A FAQ on PWD behaviour, why they’re hostile, seeing things, etc. An online plus hard copy guide , hard copy at appropriate places but online for up to the minute info, in case those that govern change benefits etc.

 

[nitram]

Is this handbook in addition to
https://www.alzheimers.org.uk/info/...ntia_a_handbook_for_families_and_other_carers ?

Maybe for carers in an active role rather than those just realising that they are a carer.

~~~~~~~~~~~~~~~~~

online for up to the minute info, in case those that govern change benefits etc.

For general info:

An excellent list of links to AS Publications and Factsheets (updated to reflect changes) already exists https://www.alzheimers.org.uk/info/...ets/861/publications_and_factsheets_full_list

 

[Tin]

A survival guide = how to ensure own health and wellbeing for what is a very difficult and sometimes physically demanding job.

 

[DeMartin]

It needs to be “entry level” geared to guide the panicked OH or child of a newly diagnosed PWD, and for those who are not computer literate. KISS is always good, no assumptions of knowledge.
No technical terms, simple guides because there are people who do not have English as a first language, those who have educational difficulties, those who are not worldly wise, and the ostrich who doesn’t believe it’s happening at all.

 

[nitram]

It needs to be “entry level” geared to guide the panicked OH or child of a newly diagnosed PWD, and for those who are not computer literate. KISS is always good, no assumptions of knowledge.
No technical terms, simple guides because there are people who do not have English as a first language, those who have educational difficulties, those who are not worldly wise, and the ostrich who doesn’t believe it’s happening at all.

I think https://www.alzheimers.org.uk/info/...MI_sGSjOi21wIVhhwbCh0aXwE2EAAYASAAEgLvx_D_BwE
covers this.
I was wondering if the new handbook was for committed carers .

 

[DeMartin]

I’ve been reading some threads, both old and new, and a lot of them indicate the poster is in panic.
How to support PWD, how to maintain a life style, what next. What’s usual

A flow chart would help. Unfortunately there is no simple path, every PWD is different.
To me a guide should help all the way from “care once a day” to “ total care”
A series of leaflets that can lead to online guides for each level of need.
Those of us who have found this website can ask and get answers, but there are a lot of people who need a guide to find us, and may not have computer access.

 

[gene genie]

Help in talking to professionals, terms they may use explained.

 

[Whisperer]

I would suggest something for new carers. I found myself in this position earlier this year and initially it is bewildering. Broad guidance on what to expect, the process of finding support locally, dealing with a sense of being overwhelmed by mixed emotions. The initial days after diagnosis and helping someone I found to be very problematic, with no prior caring or medical background. You want to help but where do you start?

 

[DollyBird16]

Thank you for asking for input
I agree keep it simple with features, advantages and benefit statements.
Remembering a carer doesn’t have loads of time to read, tabled bullet point and lists are good.
Content could include
A glossary of who are they, what is it, when and who can use and apply. Eg what is a POA how do you get it why do you need it, what is DOLs, project Herbert, incontinence team, and so on.

A checklist of actions and useful reminders the carer needs to take, such as apply for attendance allowance, sort poa, register with admiral/ local carer centre, review meds with gp, get passport photos of PWD, research day centre / care homes, driving licence changes, arrange direct debits rather than monthly bills.

Explanation of the services what do they do why would a carer use them, what benefit do they have for a carer, i.e Admiral, social services, where to get disability aids

Common behaviour types of PWD.
Best practices for carer on managing behaviour
Things to consider on choosing a care Home
Frequently asked questions

Long post, just things that immediately came to mind.
Look forward to seeing the new handbook.

 

[DMac]

"Handbook" sounds like a small and handy publication, for quick reference.

However, caring for someone with dementia is extremely complex and one person's information needs may be very different from another's. How to cover this huge diversity of needs, in some medium that is equally accessible, up-to-date and relevant to all? Maybe an encyclopaedia rather than a handbook? It would have to be updated all the time, of course, as things change. Phew! What a task that would be!

I have no answers, but I do see the challenge. This forum is fantastic for those of us with access to - and knowledge of how to use - the internet. We can search for topics or post a question and seek replies for more specific questions. There is a wealth of knowledge to be tapped into. But what about those who can't access the internet, for whatever reason? I wonder if it would be possible, or desirable, to set up a network of trusted internet buddies for carers to have access to?

 

[jknight]

1) Realize it's NOT going to get easier.
2) Do your best.
3) When you just can't do that, do your second best.
4) Breathe (seriously).
5) Try to laugh. And when that's impossible, give yourself permission to have a good cry.
6) Reach out. If you're alone, call the help numbers. Or come here and post.
7) Absolutely give up on trying to correct the PWD's inaccurate memories/recall of events.
8) Understand it's okay to 'give up' and get help when you can't do it yourself.
9) Get as much information as you can. Keep this on hand.
10) Try to stop feeling guilty.

1, I know
2. I try
3. I try
4. Can manage that!
5. Good advice!
6. Talking Point is my lifeline
7. Sometimes slip up. Beat myself up when i do
8. Not there yet. Have introduced carers to give meds and give friendship
9. Information junkie!
10. Is that possible?

 

[chick1962]

Just to concentrate on all the things you still can do with dementia, instead of the things you can’t

 

[Grable]

• How to deal with incontinence - when at home and when out. (Eg carry a bucket, water, disinfectant, soap, towels and change of clothes in the car when you take your loved one out - we were caught once without, but never again!)
• The differences between different forms of Alzheimers and vascular dementia.
• How to access funding to help with care costs - particularly when nursing care is needed
• How to choose the best care option for the sufferer and the family
• What to do when the sufferer ends up in hospital - how to prepare for the homecoming and how to ensure that homecoming isn't premature.

 

[PalSal]

1) Realize it's NOT going to get easier.
2) Do your best.
3) When you just can't do that, do your second best.
4) Breathe (seriously).
5) Try to laugh. And when that's impossible, give yourself permission to have a good cry.
6) Reach out. If you're alone, call the help numbers. Or come here and post.
7) Absolutely give up on trying to correct the PWD's inaccurate memories/recall of events.
8) Understand it's okay to 'give up' and get help when you can't do it yourself.
9) Get as much information as you can. Keep this on hand.
10) Try to stop feeling guilty.

This is the best, i have read it before and I am going to print it and hang it up this time. Thanks for putting it out there again.

 

[Amethyst59]

This is the best, i have read it before and I am going to print it and hang it up this time. Thanks for putting it out there again.

I missed this first time round. Spot on @mzoo

 

[j.s.king]

1) Realize it's NOT going to get easier.
2) Do your best.
3) When you just can't do that, do your second best.
4) Breathe (seriously).
5) Try to laugh. And when that's impossible, give yourself permission to have a good cry.
6) Reach out. If you're alone, call the help numbers. Or come here and post.
7) Absolutely give up on trying to correct the PWD's inaccurate memories/recall of events.
8) Understand it's okay to 'give up' and get help when you can't do it yourself.
9) Get as much information as you can. Keep this on hand.
10) Try to stop feeling guilty.

Very Good, I've printed this off and put it on my wall at work as a reminder when thinking about my dad