Home care packages.

[floppit]

Hi

I'm a Home Care Reviewing Officer who'd very much like to learn how we can best tailor home care for people dealing with dementia.

My work role is quite narrow, I can't hold cases long term, I can offer some, but limited, help to carers in their own right, and I don't have any power over policies. That said, my job is to recomend and commission care given through homecare services in my district and I know that has huge impact on people's lives.

Where possible I'd like to reference good practice and learning so that I can try to share it and on occassion throw my hat into the ring on bigger issues!

 

[Grannie G]

The most important point in my eyes is flexibility.

My husband has strongly resisted any people coming into the house so it had been impossible for me as his only carer to get a break.

I have found an agency which is willing to send carers in as cleaners on the pretext they are coming for my benefit rather than for my husband`s benefit.

Our carer does not pretend to clean, she changes beds, irons , vacs and polishes, and cleans the bathroom and kitchen. At all times she uses every opportunity to interact with my husband who thinks she is wonderful.

This is the first time he has accepted a stranger in the house.

 

[Brucie]

I'd agree with Sylvia on flexibility and add:

• consistency: people who have dementia [indeed people generally] prefer someone they are familiar with - ever-changing people who have different capabilities and levels of knowledge of the person, can be counter-productive
• ability - both natural and learned, for communicating with people. Sounds silly but not everyone in any job is necessarily right for the role, and it is perhaps more important in this context than in others
• empathy and understanding: in my experience it is very difficult to teach these. They can be learned, but at best through experience, which brings forth the usual 'chicken or egg' toughts

 

[floppit]

Grannie G,

What you said makes alot of sense. Unfortunately we're only allowed to set up a care package if there's a need for personal care, ie not domestic on it's own. This is why I've started to get very interested in learning more, I think there are things that need to be challenged but no-one's going to take me seriously unless I know my stuff. I thought there would be a wealth of research into home care, however at the moment I'm hampered by "home care" as a phrase also being on the end of "residential home care" plus every kind of word you can think of which changes home care into anything but home care! ('Scuse the grumble!).

Brucie,
I wholeheartedly agree with all you've said but have power over none of it - except perhaps to educate myself! The person reviewing care packages is rarely (I think never) the person who employs or trains staff.

I can commission building blocks of care, assistance to wash, a medication prompt, making a cup of tea, help to undress etc. Each task is itemised and I can add a small note - enough to tell the person the other end Mr. X doesn't need physical help to dress, just a prompt.

Once I've read enough to get heard I'd like to argue for more tailored building blocks of care to be included like doing the dusting but engaging with someone at the same time, specifically orientating for day etc (if that's what's appropriate) or to allow a domestic package as an in route into offering some care.

It seems to me there's enough people knowing it would be a good idea that somebody must have researched it and written it down - I need that reference (amongst others!).

 

[KatherineW]

It seems to me there's enough people knowing it would be a good idea that somebody must have researched it and written it down - I need that reference (amongst others!).

Hi Floppit

I just wondered whether you had contacted Alzheimer's Society's Dementia Knowledge Centre, in relation to this?

If not, it might be worth getting in touch. They may well be able to assist you.

Best wishes

Katherine

 

[Skye]

Brucie,
I can commission building blocks of care, assistance to wash, a medication prompt, making a cup of tea, help to undress etc.

This comes under the flexibility heading, but it's important to take into account the person's normal habits with regard to washing and dressing.

Someone with dementia who wants to get up at 6.00 will not stay in bed till 9.00 because that's the time the carer has free. Equally, if someone is normally a late riser, they will refuse to accept someone wanting to get them up at 7.00.

Once I've read enough to get heard I'd like to argue for more tailored building blocks of care to be included like doing the dusting but engaging with someone at the same time, specifically orientating for day etc (if that's what's appropriate) or to allow a domestic package as an in route into offering some care.

It's also important for the carer to share interests with the person they are caring for, as far as possible. For example, my husband loved long walks, and painting. He had a carer with similar interests. Crossroads is very good at fitting the carer to the person, and they might have some information that would help you.

By the way, thank you for asking us. You are definitely on the right track!

 

[floppit]

Thanks - that sounds like an amazing resource!

I found this to start with, hopefully the refs will keep me busy for a little while too.
http://ageing.oxfordjournals.org/cgi/content/full/36/2/171#BIBL

 

[floppit]

Skye,

The time slots are a nightmare, probably because carers need full time work and therefore there aren't a load more carers around over the popular time slots. Then there are things which trump everything else in terms of bagging a prefered time, having to be ready for a memory clinic, a diabetic that needs insulin at X time, that sort of thing.

The reviewing officers (most of them!) come back trying like mad to get the time their people really need, arguing the case, and crossing their fingers but the real world means we can rarely base a whole care plan on being successful getting a specific time. Sometimes wanting a specific time competes with wanting a specific provider (the carer they already know) because that provider cannot do that time. It's not that people don't know or don't care how hard it is on the other end, just no-one really knows how to fix it.

Thanks for the encouragment!

 

[Skye]

Skye,

The time slots are a nightmare, probably because carers need full time work and therefore there aren't a load more carers around over the popular time slots. Then there are things which trump everything else in terms of bagging a prefered time, having to be ready for a memory clinic, a diabetic that needs insulin at X time, that sort of thing.

Hi floppit.

I know it's not easy, and obviously administration of medication has to take priority.

I'm not even saying that people with dementia should have priority. All I would like is for carers to realise that it's very often impossible to reason with someone with dementia. If they want to get up at 6.00, or even 5.00, they will get up then.

Several of our members have had care plans fail completely because of this.

 

[JPG1]

floppit,

“residential care home”, yes. But “residential home care”, no.

A “residential care home” provides care, but not “home care”.

Any block of care you commission must take into account the needs of the person receiving that care. It must be part of the training of your care-deliverers to understand that the care they deliver must be tailored to the needs of the person receiving care. And those needs can change by the day, by the hour, by the minute. So that kind of knowledge/information shouldn’t be given to the care-givers in the form of a ‘small note’. The care-giver has to be able to interpret the signs, to spot the need, and to be flexible enough to accommodate that need and to deliver the appropriate care on the day, at the time of the visit.

The ‘block of care’ shouldn’t be decided by some formula.

Engaging with the person at the same time as delivering the care goes without saying, or should do.

Continuity of care-giver is important for anyone with dementia. Otherwise the care-giver will not be accepted willingly, as a ‘friend’. Would you willingly accept umpteen different people coming into your own home, over any given week? No, neither would I. Also, it would make life easier for the care-giver, because how else can they be expected to understand the changing needs of the person they are visiting?

Involving the care-receiver is vitally important, along the lines of gaining trust. I accept that the care-giver might not be able to share interests with all the persons he/she is visiting in any single day, that would indeed be a tall order. But he/she must be able to become interested in ‘whatever’. Even if only for the duration of the visit.

.

 

[Clive]

Hi Floppit

Thank you for asking the question.

My answer to your question is about what mum needed… I take it as said that providing what is needed is difficult which is why you want information from the Client’s side that will help you throw your hat in the future.

First of all everyone with Dementia is different and the Care Plan must be flexible to accommodate it. At the head of this thread Grannie has said that she found that the Carer had to pretend to be a cleaner to be accepted. Mum was just the opposite and would not accept anyone in her house that was anything like a cleaner or anyone she suspected came from Social Services.

Mum had a brain damaged with dementia. To provide the service that was required to help mum any Carer had to fit into the WORLD that mum’s damaged brain had created. Mum did not have the mental processing power to adapt to a system created by Service Providers.

Mum needed help because she had dementia and simple could not remember anything. She could not process any new thought or action. Anything she did was done automatically because she remembered doing it when she was younger. It was hard wired into her brain.

All the Politically Correct “security” that surrounded the Care Agency procedure was exactly what aggravated mum (and stopped her accepting help) because she could not understand it. She would not accept help from anyone who looked as if they were from Social Services. The badge hanging round the neck immediately put mum in “get out of my house mode”. To help mum the Carer had to pretend to be a friend. Whilst any trained person can give medication it requires a special person to understand how the brain works. Preferably a strictly limited number of Carers when memory is the problem.

I also had constant problems with THE BOOK that regulations said had to be left in the Clients home so that the Client would
know the address of the Care Agency,
have a copy of their own Care Plan,
know how to complain about the service,
retain a copy of the time sheet that had to be signed each visit. Etc

Just try explaining what this all means to a frantic old lady on the end of the phone in the middle of the night when she finds the book.

Sorry if this does not help with the “building blocks” of Care. It was the acceptance of the Care that I found to be the problem

Hope the above is a help

Clive.

 

[lesmisralbles]

flopppit ?

Sorry if I got the name wrong.
I need care for Ron.
Yes, I can have it at the time to suit the carers.
I want it at the time to suit Ron, and I, I am the MAIN carer.
Not enough money, not enough of anything to help us, and many more like us.
Sorry, bit annoyed today.
No help, no understanding, nothing.
Barb X

 

[floppit]

floppit,

“residential care home”, yes. But “residential home care”, no.

A “residential care home” provides care, but not “home care”.

.

I think there's a misunderstanding, the confusion re 'home care' versus residential home care (not my phrase at all) is due to the titles for research. I'm trying to find stuff about care in a person's own home, but when I type in 'home care' I get all research with those two words together - most of which is anything but home care.

lesmisralbles,
I can't begin to understand the frustration at 'the system' - well I can perhaps a little because I had a close family member in need of help they never got years ago. There's no point in me being frustrated too, I'm paid, paid through tax to do whatever I am able within my job and nobody would want to pay me to be frustrated rather than dig in and do what I can.

I think it helps me to see that there isn't some cold, idiot deliberately denying people what's so obviously helpful, we're as trapped by realities as the next person. BUT that's why I think it matters to learn so that the best possible decisions are made.

Clive,

Yeah - I get where you're coming from. I would hope if your Mum was on my patch that I could negotiate a get out clause for the books and care plan - although I'm not certain because we have fought really hard to make sure they're there, because for most people they so need to be.

I get that it's about individuals and flexibility but I don't have all the answers how to make that work well in what is a HUGE system involving individual care for 1000's of people over considerable geographic areas and multiple independant sector care providers.

I like where I work, while the realities are hard sometimes there's no pressure on me to do anything other than try to arrange the best, most individualised care possible. I've never been pressured to cut care plans and I can see where the restraints come from so I don't FEEL as though it's a fight against someone or something, more learning how best to fight with people, very much including carers and service users.

I hate the ruddy computer system though!

 

[ella24]

Hi Floppitt

One thing we found hardest to deal with for day-support at home for my gran was that the carers didnt always do what was specifically requested in the care plan - due to time/lack of awareness. Also there wasnt always an escalation if there was an issue (for example if meds were not available/in the correct place, the carer didnt escalate and just wrote in the diary...)

I guess your organistaion is a member of the UK homecare assciation? http://www.ukhca.co.uk/ as a professional association they must have a library of information that the personal input you have got from members here will support?

good luck

e

 

[floppit]

I work for a council - we have a library somewhere, I don't know where. From experience I reckon I can find more up to date info myself, with a bit of help .

I'm also doing the study in my own time, juggled around a 16 mth old toddler (aka munchkin).

She has a cold at the mo so is sleeping a little more and I have more time hence getting on here and trying to fastrack my learning with help from others.

 

[ella24]

I dont wish to sound churlish, but I can see that you are having exactly the same issues in finding information and consistency of information that so many carers (and Social Services teams) have!!! (is there no central 'charter' or signpost document?)

Keep asking, and between us we'll find what we can for you!

hope the munchkin is better soon!!

e

 

[JPG1]

floppit,

Just a suggestion:

Have you tried a Google ‘advanced search’? That should let you find web pages that have “home care” but not “residential”. Or whatever words you are searching for, but excluding words you aren’t interested in.

Or you can just type home care –residential into the standard search box, and it should bring up only pages without the word residential.

It’s called a Boolean Search, and Sandy will be better equipped to explain it if she’s lurking!
http://www.internettutorials.net/boolean.asp

.

 

[Maya]

Home care needs

Time ! Need to spend time to understand my Mum as her communication is way down ! She uses facial expression and body language so she needs continuity of carers - trouble is the respite care is provided by a different team to the main care.

I need to plug holes in the care plan with private care by the looks of it and that means using another agency. In the end I will end up just staying in I know it.

Also dementia training - is this provided to all agency workers ?

One health professoinal put the fear of God into me the other day when he asked if I had considered how home carers are audited and monitored - unlike the care homes who are at least insepcted - not sure do you know ?

And the thing already mentioned which you cannot buy, train or instill if it aint there - dedication and patience.

 

[Sandy]

Hi Maya,

One health professoinal put the fear of God into me the other day when he asked if I had considered how home carers are audited and monitored - unlike the care homes who are at least insepcted - not sure do you know ?

Home care agencies (domiciliary care agencies) are inspected by the same authority that inspects care homes, the Care Quality Commission:

http://www.cqc.org.uk/registeredservicesdirectory/rsquicksearch.asp

You can even read the 26 page document that describes the standards that they are inspected against:

http://www.cqc.org.uk/_db/_documents/Dom_Care_Regs_2002.pdf

The problem is that it is very difficult to assess what is done in the privacy of someone's home, where a person with dementia may not be able to give a clear account of the care that they have received and where written entries made by carers in care plans might not always be accurate.

Take care,

 

[dedcool]

care homes and training

Hi I have entered into the world of dealing with care homes and alzheimers. My sister lived in the South of france and was struck down with this dreadful complaint, it became obvious that her dear husband could no longer care for her and there situation was very bleak. The only thing I Could do was to bring her back to the UK, the last 18months have been very emotional, but at last I have got her Husband over and settled near her and together we are watching over her. If there is anybody who would like to converse with me about ideas of improving the training process or feed me any information on this subject Iwould be truly grateful.MY Qualifications in teaching and the NVQ system are in place and am reaping vast informaton to compile a training manual, which hopefully will include more about Alzheimers. I do not know where this will lead me I just know Ihave to give it a try