1. Expert Q&A: Protecting a person with dementia from financial abuse - Weds 26 June, 3:30-4:30 pm

    Financial abuse can have serious consequences for a person with dementia. Find out how to protect a person with dementia from financial abuse.

    Sam, our Knowledge Officer (Legal and Welfare Rights) is our expert on this topic. She will be here to answer your questions on Wednesday 26 June between 3:30 - 4:30 pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

  1. Vicki

    Vicki Registered User

    Feb 21, 2005
    10
    Hello

    The Alzheimer’s Society is starting a new project on respite care or short breaks for people with dementia and their carers. We want to explore whether people are able to easily use these services and whether they are meeting the needs of people with dementia and their carers.

    I would welcome your views and experiences on this issue. I have set out some questions below but please feel free to give me your thoughts on the topic generally.

    I look forward to the debate!

    Best wishes

    Vicki

    Talking point questions on respite

    Do you think respite / short break services are important to people with dementia and their carers? Why?
    What respite/ short break services have you used?
    If you have never used respite services, what are your reasons for this?
    How well have these services met your needs as a carer?
    How well have these services met the needs of the person who you care for?
    What would make respite services better for you and the person you care for?
    Any other comments?
     
  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    #2 Brucie, Apr 12, 2005
    Last edited: Apr 12, 2005
    Hi Vicki

    here are my replies!

    Do you think respite / short break services are important to people with dementia and their carers? Why?


    Not for me. Respite means a rest for the carer, and while Jan was at home under my care, I wouldn't want to put her away except in an emergency. So I guess that might be a qualifies 'yes', realy, as long as instant access, quality short term respite were available. [see below]


    What respite/ short break services have you used?


    none [see below]


    If you have never used respite services, what are your reasons for this?


    the one time I needed to be able to use this, which had been offered me for some time, they told me there was a six month waiting list. Waste of space!


    How well have these services met your needs as a carer?


    lack of availability when needed meant they didn't meet needs at all


    How well have these services met the needs of the person who you care for?


    see previous reply


    What would make respite services better for you and the person you care for?


    availability at short notice because carers tend to go on until they are about to drop, and that is when the respite is needed



    Any other comments?


    no
     
  3. Anne54

    Anne54 Registered User

    Sep 16, 2004
    147
    Nottingham
    I’ll do my best, this could take a while.

    Do you think respite / short break services are important to people with dementia and their carers? Why?
    Respite is important to me it helps me carry on caring. Fred’s day centre is very important to him he meets other people in the same boat as him, he is not alone.

    What respite/ short break services have you used?
    Day centre two days a week. Residential one week every two months. Crossroads twice a month for fore hours a time.

    How well have these services met your needs as a carer?
    The day centre is fantastic the transport is a night-mare, he has to be ready by 8 in the morning they may not pick him up until 12, then he is back at 2.30 some days.
    Residential is OK for me but it took over a year to find a home that would agree to have Fred because of his age.
    Crossroads is very good.

    The needs of the person how well have these services met who you care for?
    Fred loves his day centre but gets very agitated when the transport is late.
    Residential is an old peoples home and Fred is 58 tomorrow he always has a moan about that.
    He likes Crossroads coming, someone else to talk to.

    What would make respite services better for you and the person you care for?
    Transport coming at the same hour would be nice.
    Residential that is just for younger people would be great.

    Anne
     
  4. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    YES - I have used respite, but had to organise this myself. As Lionel was only 61 at that time I was able to place him in A Resitential Retirement Home. They took to Lionel, he to them, the rest is history.
    SS have now suggested rolling respite, but no local homes offer this. Also Lionel is still under 65, so needs Early Onset Care - not available.

    I agree with Bruce, but at present I am very low due to a virus, but cannot easily access care, even from Crossroads. As far as I am concerned the systems STINKS, and I shall shal still struggle on as best I can.
    CONNIE
     
  5. Patrick

    Patrick Registered User

    Apr 9, 2005
    8
    Swindon Wiltshire
    Respite Care is essential to me as a full time carer. The stress and strain of such, has in the past, pushed me almost to the limit of despair, which I'm sure is the case with a lot of full time carers. I'm not a nurse and I have no training, I do it out of love. If it was not for respite there would be two patients not one.
    My partner attends a Day centre 5 days a week from 8.00am till 2.30 which is great but I still need to get away for a week or two and in so doing I need to know dates in advance so that I can book holidays/breaks. This year has been fine, they have given me 4 x 1 week breaks and 1 x 2 week break, with which I'm delighted. The only thing that could make my circumstances better would be to give me more notice of the dates, but I'm not complaining.
     
  6. Patrick

    Patrick Registered User

    Apr 9, 2005
    8
    Swindon Wiltshire
    Respite Care is essential to me as a full time carer. The stress and strain of such, has in the past, pushed me almost to the limit of despair, which I'm sure is the case with a lot of full time carers. I'm not a nurse and I have no training, I do it out of love. If it was not for respite there would be two patients not one.
    My partner attends a Day centre 5 days a week from 8.00am till 2.30 which is great but I still need to get away for a week or two and in so doing I need to know dates in advance so that I can book holidays/breaks. This year has been fine, they have given me 4 x 1 week breaks and 1 x 2 week break, with which I'm delighted. The only thing that could make my circumstances better would be to give me more notice of the dates.

    Patrick
     
  7. Vicki

    Vicki Registered User

    Feb 21, 2005
    10
    Respite care - part two

    Dear Talking Point members

    It was really interesting reading your views on respite and short break services. Most of you agree that respite is a vital and valued service that enables carers to carry on caring. I’ve got a few more follow up questions:

    ·What are people’s views on rolling respite? This may mean that a carer receives a short break from caring for one or two weeks on a regular basis, for example every two months. During this time, the person with dementia receives in-home care, where a care worker cares for them in their home, or stays in a residential care home.

    ·What are the three key factors that make for good quality respite/ short break services for people with dementia and their carers?

    As before, please feel free to answer these questions or raise other issues that you feel are important in relation to respite/short break services for people with dementia and their carers.

    Thanks in advance for your contributions

    Vicki
     
  8. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Dear Vicki, thank you for your continued care. As I have said before, I have been assessed as needing Rolling Respite. Unfortunately we have no care homes in our area that can offer this service. Incidently it only seems to be mentioned to those who fund their own care. THERE JUST ARE NOT THE PLACES, OR RESORCES, OUT THERE. I have just had 5 days away. which entailed me putting Lionel into respite for one week, so that I could use one day to take him and settle him, and one day to collect him. Bearing in mind that I had to organise this myself, and Lionel had to pay in excess of £500, it makes you wonder if it is worth all the effort. Although I know I could not cope with 24/7 caring without a small break. Connie
     
  9. Patrick

    Patrick Registered User

    Apr 9, 2005
    8
    Swindon Wiltshire
    Rolling respite

    Dear Vickie

    I'ts so nice to know that someone acknowledges the ongoing problem of Respite.
    Rolling respite of say 1 week in every 2 months sounds like "Gold dust" to me. All my family live some 200 miles+ away from me, so the only chance I get to see them is if I have the luxury of a weeks respite, my Jenny is unable to travel.
    Key factors-;
    1. To ensure patients are cared for with a similar degree of hygiene being recieved at home, which in my experience is not always the case.
    2. To preserve the dignity of the patient by means of personal appearance. Some patients I have seen in care homes look so drab and uncared for with hair and clothing skeewhiff.
    3. To ensure attention is given to the patient on a one to one basis from time to time with regard to conversation.
    Thank you so much for your continued interest, I dont know how I would cope without this talking point.

    Patrick
     
  10. Marilyn

    Marilyn Registered User

    Feb 24, 2005
    13
    Gloucestershire
    As most carers will tell you, trying to obtain Respite Care is absolute murder! Last year, I was in such a state, & desperate for a break, my local mental health authority agreed to let Dad go to a Day Hospital for a week (for assessment).It couldnt have come soon enough I can tell you. I also looked into holidays for people with Dementia (to be cared for by others) NOT with me as a Carer going as well. NO CHANCE!! The British Legeon run holidays for older people but NOT if they have dementia & certainly not if they have Altzheimers. I have been able to use one local care home in the past, BUT NOT ANT MORE as they are only for RESIDENTIAL CARE and most care homes are doing this now. Respite care is extremely difficult to get EVEN IF YOU ARE SELF FUNDING. My social worker has now discovered a PRIVATE family home (wife,husband, 2 little boys) who took Dad for Respite Care for a week. They are absolutely lovely & enjoyed having Dad as he 'behaved himself' with them, where he is a totally diferent person with me.Sometimes its not always Altzheimers to blame !! Whilst Dad was with the private family, he attended the day centre for one day. The facilities were fabulous. A purpose built centre, home cooked food, activities etc. Things are geting better Thank God. We now have so many old people in this country (with mental health probs) & we are going to have more & more. On the whole now, its taken me 3 years of being constantly 'on the case' and having to chase things up & find things out for myself. We are fortunate in our area. I know too many others are not. I know both men & women are living longer, but there must be another reason for the huge increase in dementia's of all kinds. In my own case, Dad is fit as a fiddle & the Dr. says he has a heart as strong as an Ox ! Altzheimers can run from 10 to 15 years. Dad is already 84 in July. He could well live to be 100 ! & is not prone to chest infections, diabetes etc. I am 53 myself in a few months. I will be dead & gone before Dad! My life expectancy is 72 & I will be way to old to the things I want in my life. Life is very difficult when you are the sole carer ! Thankyou for this opportunity to 'go on.'
    Marilyn.
     
  11. Marilyn

    Marilyn Registered User

    Feb 24, 2005
    13
    Gloucestershire
    Transport

    O Anne. I just had to reply! I couldnt agree with you more about the transport coming at regular time !!! Dad gets so aggitated, having to hang around waiting.They do come in the end, but it doesnt help either the Carer or the patient when there is aggitation, which causes stress all round.I have to take Dad to Crossroads myself twice a week.Its not ideal but at least I can get him there regular, same time. ROUTINE & ORGANISATION are VITAL in these cases & even slight variations can cause chaos. I have to take Dad to most of his daily activities.One week, the Wednesday club went on a boat trip outing all day.I'm sure Dad enjoyed it at the time, but boy!!! did I have problems with him for 2 days afterwards! He couldnt settle & was very aggitated & aggressive.
    Have you tried the BUTTERFLY TRUST where someone comes into your home if you need a break for a few hours.?I havent used it so far, but Im thinking about it.Im also thinking about DIAL A RIDE.Maybe it would be more reliable though I think £2.50 is rather expensive. Any thoughts?
    Marilyn. ps. Fred is 54 !!!!! Thats so young to have dementia probs !!
     
  12. Marilyn

    Marilyn Registered User

    Feb 24, 2005
    13
    Gloucestershire
    Rolling Respite

    What is rolling respite ? Early onset care? What is this? Ive never heard of either.
    Marilyn
     
  13. Marilyn

    Marilyn Registered User

    Feb 24, 2005
    13
    Gloucestershire
    Ooopps!!

    Ooops!!!! Fred is now 58 I take it. I said 54. Sorry. Thats still young isnt it!!
     
  14. Anne54

    Anne54 Registered User

    Sep 16, 2004
    147
    Nottingham
    Dear Marilyn

    Fred was 48 when he lost his job because of AD he is 58 now. I’m the one who is 54.
    We have crossroads come and sit with Fred when I go to carers meetings.
    Anything out of routine is bad. He even likes the same meals on the same days every week, very boring.

    Anne
     
  15. Margarhett

    Margarhett Registered User

    Apr 30, 2004
    22
    Manchester
    #15 Margarhett, Jun 15, 2005
    Last edited: Jun 15, 2005
    I just wanted to have 2 nights away from my husband who I care for, (he did not want to go on the trip I have planed) so I have to find respite - what a joke.
    As my husband is 46 there is nothing. I have been looking for 4 weeks and there just isn't anything for someone so young.
    I am due to go next week and it looks like I will have to either get in a nursing agency or cancel my trip and loose the £300 I've paid for my trip. The service is a disgrace.
     
  16. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    One of my sons and his family want me to go sking with them NEXT YEAR. The situation being we have to book early to ensure going in school holidays.
    I cannot access respite this far in advance, so have to book hols and hope to be able to get respite when the time comes.
    We have a wondeful new dementia home about 10 miles away. Very costly £600 p.w. but strictly p.w. Can anyone tell me how I manage to get Lionel to the Home and get to the airport on the same morning, and best of all, pick him up by 10am just seven days later.
    Respite - what respite. I am going ahead and booking the familily sking trip, as we may never have this opportunity again. I shall worry about everything else nearer the time. - I shall employ Normans adage - day by day. Connie
     
  17. angela.robinson

    angela.robinson Registered User

    Dec 27, 2004
    520
    HI CONNIE,who knows what nexed year may bring .i never thought just a few months ago that JIMwould not be with me now .just a short while ago ,i had to start using carers ,i did not know that they also do escort service too ,this would have solved my problem getting him to respite,,could this be an option for you?i hope you do get to go sking,and that somehow you start to get a little more help ,unfortunatly i started to get help a little late for us.best of luck ANGELA
     

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