Trevor Jarvis – Why I support Dementia Friends

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Trevor Jarvis

It goes without saying that dementia has changed my life. Since my diagnosis in 2001 I have found day to day tasks a little more difficult. Things like doing a weekly shop or finding my way round once familiar towns. However, this doesn’t mean that I want to hide away from doing these things. On the contrary, being able to live as independently as possible has become, if anything, more important over the past few years.  I just might need a helping hand from time to time to make this possible. While I am very lucky to have amazing friends and family who, when with me, are always happy to give me their time, there are times when I may be out and about on my own.

One such occasion recently was when I was in my local bank trying to deposit some money. Unbeknown to me I was doing something wrong – pressing the wrong button or entering the wrong number, I’m still not sure. The response of the cashier was to point me towards a sign. But as my dementia can affect my ability to read, this was of very little use to me. Obviously confused, I received no more help from either the staff or the other customers in the bank. In the end I was able to speak to the bank manager and a few days later did receive a letter of apology. However, what I would rather have is assurance that if this were to happen again that I know I wouldn’t be alone. To know that I could turn to staff or customers in the bank, shop, or wherever I might be.

Dementia Friends could be the answer to this. I fully support the notion that at the heart of making life easier for people with dementia and making places more dementia friendly is increasing awareness and understanding among the wider public. After all, dementia isn’t the most straight forward condition to identify. People who are blind may have a guide dog, people with mobility problems may carry a stick but what is the visual sign of dementia? If people don’t know the symptoms, it’s not that obvious. The more people understand though the clearer it becomes.

What my story shows as well is that Dementia Friends doesn’t have to be and shouldn’t be just about people who directly know someone with dementia – although apparently more than half of you actually do. It’s members of the public or people behind the counter who would have made the difference while I struggled in the bank. It could have been a 16 year old schoolboy or a 75 year old grandma. It could have been a teacher, a builder or a lawyer. After all everyone uses banks don’t they.

This has been an exciting year for me and for people with dementia generally. For the past six months I have sat on a dementia friendly communities champions group set up by David Cameron. It has been inspirational to hear about and be able to feed into the work that is going on across a full spectrum of sectors. From banks to emergency services and schools we are seeing really interesting things happening in all walks of life. Dementia Friends is to me the obvious next step and one I am so glad is happening.

I know I will be encouraging people I know to become Dementia Friends. Hopefully you’ll do the same.

Trevor Jarvis

30 thoughts on “Trevor Jarvis – Why I support Dementia Friends

  1. Sue Dyke

    Dementia friends is so important to making a difference to those that suffer from this dreadful illness. For 2 years I cared for my father who was officially diagnosed with vascular dementia following the sudden death of my mum. Mum had done an amazing job of making sure dad’s problem was not obvious, and I must admit I never picked up the early signs. Like many his friends stopped visiting and only for myself and his wonderful companion service he would have been very isolated.

    Dad sadly passed away in August, but my experience of the illness and the support he needed has made me determined to help others and share my knowledge with others. Dementia friends can only be a good thing for all sufferers of any age.

    1. Lena G

      It was so encouraging to learn of this Dementia Friends campaign being launched. My Mum was diagnosed a few years ago. Fortunately she is still very independent but does get confused in certain situations. Raising awareness of this condition will provide alzheimer patients and their families with an added sense of confidence when they are out and about alone. Although I’m now more aware of how to help my mum and other alzheimer patients – this has come only after a lot of research and great advice from the Alzheimers Society.

      If there is a way to raise awareness and provide information of the “signs” of dementia and when it may be appropriate to offer help or behave in a way which enables the patient to lead a normal life than it can only bring about a positive change.

      Well done for launching this, I’ll definitely be promoting it to all who will listen.

  2. Catherine Hall

    Dementia Friends sounds wonderful and I shall cetainly be volunteering and enlist my family members to do the same. I never realised how easily we could make a differance.

  3. Pam Ayers

    At last….something really positive we can all get behind to start making a difference. yes, it really is that easy and what an incredibly difference it will make especially to those who do not have any informal support networks such as family or friends. I too will be supporting this initiative and encouraging others to follow.

    1. sandra

      Hi Pam, really agree. Its about time progress was made with dementia care. It can be a very frightening lonely time for families not knowing what they should be doing to try and help these people who are suffering. My mother has alzheimers and has recently had a stroke. From day one all I have ever wanted to do was to help her with this illness. Reading other peoples views on their journey may it be a relative or friend is always useful and the more people who join can only be a very positive action. Looking forward to having lots more support given. I have always thought how can you begin to help when you don’t really understand this disease, I had to find everything out for myself but luckily The Alzheimers Soc. were brilliant. They even arranged for a out reach worker to visit me at home to talk about my mum.
      Anyway – brilliant idea-Dementia Friends!

      Regards sandra campbell.

  4. Chris Mills

    I am so pleased that this initiative is being launched and not before time. I have worked with Dementia for the past 25 years in various care homes run by the local authority. In the early days they were not designated for dementia care, we looked after our residents even when they started to show signs of dementia, we cared for them until in started to impact on their well being or that of the other residents. The last 6 years I have worked in a dementia unit as Assistant Manager and have seen the changes in how social services and health service towards mental health. Although the health service in our area has closed several mental health care and assessment centres making it very difficult to get help when residents conditions change.
    I have registered my name to become a dementia friend and look forward to meeting like minded people and help suffers to find their lives easier.

    1. sandra

      Hi my mother is in a nursing home and I am continually trying to find new ideas for her and her fellow residents. What kind of activities did you have in the home you worked in. My mother has alzheimers and has recently had a stroke. She is still aware of many things, has good days and bad days.

      many thanks sandra

  5. naggeruk2

    a couple of years ago due to a mishap I was suffered the misfortune of being confused. It was to me just like I had dementure. If someone spoke to me I couldnt answer them because even though I listened and tried to comprehend what they were saying I immediately forgot what they had said. So even if it was one sentence I couldnt answer. I felt very frightened and alone as people just lost patience with me and couldnt do anything to help. I felt lost and alone and upset when people got impatient with me. It reminded me of the time when I was a toddler and lost my mum whilst out shopping.
    Thankfully I am now back to normal

  6. Eileen Parker

    I hope it works, however there are some people with dementia who are very very very difficult. I do have experience with dealing with people with dementia and thought I could cope but her personality just got nastier, tonight I am in bits after trying to help her with a difficult situation, she has said she does not or never has loved me, it may be different next week. Mental Health are not very helpful, I am fed up of being accused of stealing from her bank account, and her neighbour cannot enjoy the abuse or council workmen having used the f word used towards them. Sorry but dementia is not happy clappy it is awful and I do not think a friend can help

    1. claire

      that sounds an awful situation – it may be wise to speak to an Admiral Nurse at DementiaUK – they offer personal practical and emotional support to carers and families looking after someone with dementia – they are particularly helpful when it comes to caring for someone who is becoming challenging which is so difficult to deal with http://www.dementiauk.org/what-we-do/admiral-nursing-direct/

      The line is staffed by qualified mental health nurses who are experts in dementia

      Good luck !
      X

  7. Julie

    Im definitely behind this. My mum has had this for 3 yrs and the toll it takes on the family is immeasurable. We are at the stage ofn24/7 care at home for her with a provider, but it’s been an uphill struggle 100%, not getting the exact answers from anywhere in authority. Financial support being the biggest milestone and still confusing to sort out. Some days are the most unrewarding and frustrating I have ever experienced and then someways eleven tho Mum says the strangest things we all end up laughing, and so does she. They are the best days we can hope for but what a sad way, that you are trying constantly to make her days enjoyable and then she doesn’t remember a thing you’ve done! We often think we have all got it!

    1. sandra

      Hi, my mum has Alzeihmers and is also in a nursing home full time. What an new experience for all of us involved. Social services/nursing homes its all a mind blowing experience but by word of mouth we managed to get mum into a what you would call a ‘good home’. Its new and purpose built and deals with dementia. Mum was diagnosed last year with the early to mid stages of this disease and then just before xmas had a stroke which has caused so much more damage. Considering all she has to deal with she does very well. I remain very positive for my mum and try to work with the things she can still enjoy. She loves music so I bought her a mini cd player for her room with cd’s. At mum’s home they have a lady who is employed for stimulation. I try and work with her for ideas. We discoverred they loved singing-especially the old fashioned nursery songs. Mums speech is not what it was and when she gets tired this gets worse for her. I have learn’t to use short sentences with lots of eye contact no other distractions for her with a yes no answer. She loves lots of cuddles, holding hands,touching my face and hair. Mum does not walk anymore so is in a chair. She moves her arms and legs well and loves me to massage them. I do her nails, cut them, file them and put nail varnish on them. Lots of lovely foot and leg cream. I use creams with essential oils, especially lavender. This is such a good idea demetia friends, would love to share my experience with others and hopefully gain new ideas.

      many regards sandra

  8. Sue Donkin

    I first encountered dementia in the 70’s when a friends mother was diagnosed. I remember how the family took great care of her at home but friends and family stopped visiting. How difficult it was for them all and how , if just one person had helped, the difference it would have made to that family. Since then my mother developed dementia in her last years and we were fortunate she was in a care home that could help her and us so much.
    Dementia can effect anyone from any background or age. What a wonderful idea to be as inclusive and supportive as possible, to make things easier for sufferers and their carers. Count me in please.

  9. Amanda Stokes-Waters

    My mum has suffered with Alzheimer’s for the last 10 years. During that time she suffered humiliation and disregard from the public who were ignorant in understanding her condition and what that meant for her ability to do simple day to day tasks. An initiative such as this would have made all the difference to her in being able to continue to live independantly for longer. I will be fully supporting this as it rolls out and am actively encouraging the company I work for to also support other employees to volunteer. I am looking forward to getting involved and hopefully helping to make a difference to someone’s life.

  10. Erica

    From little acorns, oak trees grow.
    I like to think of the dementia friends as being little acorns.
    Many of them around, leading to big changes in the field of dementia.
    Changes that are badly needed, as I have found out on the 4 year journey with my mum.

  11. Lesley Loizou

    My mother was diagnosed with vascular dementia ten years ago. Prior to her diagnosis she had been exhibiting symptoms for 2-3 years, as a family we had had no prior experience of the disease and therefore, did not realise what was going on. Had we had any idea we could have sought help much sooner and also have given mum the much needed reassurance that she needed as she struggled to understand what was happening to her. It wasn’t until she started refusing to socialise that we understood there was something seriously wrong, she had always been the ‘life and soul’ of our family gatherings.

    For the past five years I have been working in the care sector for providers of specialist care for people living with dementia. This has been a very rewarding experience for me and not only do we help the person living with dementia to enjoy as much independence and quality of life as is possible but also help to support the families who are often devastated by this condition.

    Having spoken to 100’s of families about their experiences a common theme is that people are often ostracised in public places when they take their loved ones out because the public do not understand what is wrong and are uncomfortable. The consequence is that increasingly people keep their loved ones isolated at home rather than face embarrassment and this increases the frustration for the person with dementia as their world becomes increasingly smaller, often exacerbating symptoms and accelerating the deterioration.

    I would very much like to help with this vital service to educate the wider community to recognise the symptoms and give them the skills to help people rather than avoid them and in some cases can be hostile towards them as they fail to realise what is wrong.

    The approach that is taken to someone with dementia can make or break their day, as the disease progresses and verbal communication becomes increasingly difficult our body language and facial expressions become much more vital to communicate with the person. A smile and a gentle touch can be all it needs to transform the moment. It could happen to any one of us.

    Like Amanda said – count me in, count my organisation in, count my family in, and finding this initiative has given me inspiration for how we can help to educate people within the communities in which we live and work.

  12. Tina Barudi

    My mum has dementia, when the symptons first started to appear I had no idea what was going on, personally I went through every emotion from anger to sadness basically because I didn’t understand or know what was happening. Once she was diagnosed it still took a while for me to deal with it, but now I know she is happy in her own little world and she makes me laugh.
    When you do not know what is happening to a loved one is it very difficult for other family members to understand. If I can offer any help to someone whose lives are affected by Dementia whether it was the sufferer or the family I would be very happy to do so.

  13. Bernie Gibson

    My foster mother got dementia, and ended up in a council home. We knew things were wrong when she would ask us to do the tea and get the biscuits out when we had already done that half an hour earlier.! Confused, she was unable to look after herself, and after a fall had to go into a home. She was vulnerable as well, she got a man to cut her hedge for £20, and he kept coming back, thinking he was onto a good thing. This was about 15 years ago when not as much was known about dementia.
    Like most families you learn to cope with dementia, and organise your life around it. But for some people that are not affected, waiting for someone at the checkout, who is a bit confused, can be irritating. But just think for a moment if it was your mum and dad, how would you like them to be treated?
    After working in local government office for 30 years I have changed direction and become a community carer helping older people live in their homes. No doubt I will see lots of people with dementia as part of my job now but I think it is all our responsibility to help and try to understand those who are vulnerable. After recently volunteering for Age Uk and Mind and Rethink Mental Illness to lessen stigma against mental health I am volunteering to learn and be an advocate for people with dementia.

  14. Janette K

    I welcome this initiative. My aunt died a few years ago after suffering from dementia for a number of years, another uncle is now suffering from advanced dementia and sadly my own mother is in the early stages of dementia at age 81. I have signed up to the initiative but noticed that some of the information states that David Cameron is hoping to sign up 1 million friends in England. Can someone confirm if this initiaitive is UK wide or only in England? I live in Scotland.

  15. Roy Bond

    I was prompted to register my interest in Dementia Friends by an item on television, North West evening news, I think.
    I have a neighbour who I used to greet each day going for his morning paper. Not having seen him for a while I enquired was told he had Dementure.
    Last Saturday I had a conversation with a friend about a mutual aquaintance who she had worked closely with for some years. After a while she admitted that she could not remember who I was talking about ?
    I find that Dementia is a taboo subject but am sure there is so much that could be done to assist early sufferers in their day to day lives.

  16. Malc Sharrock

    My Caree and wife Janine has shown signs of dementia for over 25 years.
    As her Caror I didn’t understand what was going on until 2006 when she was formally diagnosed with dementia of the Alzheimer’s kind.

    I am deeply concerned that the focus for support continues to be towards those with the disease. My wife, Janine, has Alzheimer’s; I suffer from it.

    If we don’t throw our weight behind supporting the Caror, how are else are we going to deliver care and support for their Caree?

  17. linda patston

    My late mother was in a nursing home because of her deteriorating physical disabilties. However she became increasingly forgetful and showed all the signs of early dementia. That is where our problems began. Despite repeated attempts to get my mum assessed and diagnosed so that a more appropriate nursing home could be found that specialised in dementia care no one seemed to take this seriously and she deteriorated mentally very quickly. The GP attached to the home was absolutely useless and the nursing staff somewhat apathetic and it was only with my continued insistance that he finally agreed to refer her for assessment. To little to late… sadly my Mum passed away and I am left with those awful memories of the lack of appropriate care she received in her last year of life which could have made her life so much happier. If I can in some way stop this happening to someone else or their loved one then sign me up .

  18. JACQUELIN CERQUA

    My husband, Vinnie, was diagnosed in 2005 with Alzheimer’s Disease. We became active in Leeza’s Place, here in Melbourne, Florida. I attended support groups, and Vinnie enjoyed being with the other “loved ones”. He used to say , “it was good to be with people who were like him”.
    After Vinnie’s passing in August, 2011 I became an Advocate for Dementia. I support people who are just entering the long journey of Alzheimer’s Disease.
    This past summer, I started teaching with another former Caregiver, an Attorney and Certified Public Accountant about what steps you must take when you or someone in your family receives the diagnosis of Dementia.
    We plan to continue teaching this course in a local program called : S.A.I.L. (Seniors in Adventures in Learning.)
    We hope to educate people so that if or when they ever get the diagnosis they will be prepared.
    I would love to be a part of Dementia Friends and bring awareness to as many people as we can, and change the stigma that Dementia carries….

  19. Maxine

    I came across some advice that has helped me to understand how it feels to have dementia/alzeimers, I often read it when I am feeling frustrated, I hope it helps someone else. Posted with love to everyone involved.

    DON’T
    Don’t reason.
    Don’t argue.
    Don’t confront.
    Don’t remind them they forget.
    Don’t question recent memory.
    Don’t take it personally.

    DO
    Give short, one sentence explanations.
    Allow plenty of time for comprehension, then triple it.
    Repeat instructions or sentences exactly the same way.
    Eliminate ‘but’ from your vocabulary; substitute ‘nevertheless.’
    Avoid insistence. Try again later
    Agree with them or distract them to a different subject or activity
    Accept blame when something’s wrong (even if it’s fantasy).
    Leave the room, if necessary, to avoid confrontations.
    Respond to feelings rather than words
    Be patient and cheerful and reassuring. Do go with the flow.
    Practice 100% forgiveness. Memory loss progresses daily.
    My appeal to you: Please.elevate your level of generosity and graciousness.

    Remember

    You can’t control memory loss, only your reaction to it. Compassionate communication will significantly heighten quality of life.

    They are not crazy or lazy. They say normal things, and do normal things, for a memory impaired, dementia individual. If they were deliberately trying to exasperate you, they would have a different diagnosis. Forgive them … always. For example: they don’t hide things; they protect them in safe places… And then forget. Don’t take ‘stealing’ accusations personally.

    Their disability is memory loss. Asking them to remember is like asking a blind person to read. (“Did you take your pills?” “What did you do today?”) Don’t ask and don’t test memory! A loss of this magnitude reduces the capacity to reason. Expecting them to be reasonable or to accept your conclusion is unrealistic. (“You need a shower.” “Day care will be fun.” “You can’t live alone.”) Don’t try to reason or convince them. Give a one sentence explanation or search for creative solutions. Memory loss produces unpredictable emotions, thought, and behavior, which you can alleviate by resolving all issues peacefully. Don’t argue, correct, contradict, confront, blame, or insist.

    Reminders are rarely kind. They tell the patient how disabled they are – over and over again. Reminders of the recent past imply, “I remember, I’m okay; you don’t, you’re not. ”Ouch! Refer to the present or the future. (If they’re hungry, don’t inform them they ate an hour ago, offer a snack or set a time to eat soon.) They may ask the same question repeatedly, believing each time is the first. Graciously respond as if it’s the first time. Some days may seem normal, but they are not. They live in a different reality. Reminders won’t bring them into yours. Note: For vascular dementia, giving clues may help their recall. If it doesn’t work, be kind … don’t remind.

    Ethical dilemmas may occur. If, for instance, the patient thinks a dead spouse is alive, and truthful reminders will create sadness, what should you do? To avoid distress, try these ways of kindness: 1) distract to another topic, or 2) start a fun activity, or 3) reminisce about their spouse, “I was just thinking about ______. How did you two meet?” You might even try, “He’s gone for a while. Let’s take our walk now.”

    Open-ended questions (“Where shall we go?” “What do you want to eat/wear/do?”) are surprisingly complex and create anxiety. Give them a simple choice between two items or direct their choice, “You look great in the red blouse.”

    They are scared all the time. Each patient reacts differently to fear. They may become passive, uncooperative, hostile, angry, agitated, verbally abusive, or physically combative. They may even do them all at different times, or alternate between them. Anxiety may compel them to shadow you (follow everywhere). Anxiety compels them to resist changes in routine, even pleasant ones. Your goal is to reduce anxiety whenever possible. Also, they can’t remember your reassurances. Keep saying them.

    Examples

    Don’t reason

    Patient What doctor’s appointment? There’s nothing wrong with me.”
    Don’t (reason) “You’ve been seeing the doctor every three months for the last two years. It’s written on the calendar and I told you about it yesterday and this morning.”
    DO (short explanation) “It’s just a regular check-up.”
    (accept blame) “I’m sorry if I forgot to tell you.”

    Don’t argue

    Patient “I didn’t write this check for $500. Someone at the bank is forging my signature.”
    Don’t (argue) “What? Don’t be silly! The bank wouldn’t be forging your signature.”
    DO (respond to feelings) “That’s a scary thought.”
    (reassure) “I’ll make sure they don’t do that.”
    (distract) “Would you help me fold the towels?”

    Don’t confront
    Patient “Nobody’s going to make decisions for me. You can go now … and don’t come back!”
    Don’t (confront) I’m not going anywhere and you can’t remember enough to make your own decisions.”
    DO (accept blame or respond to feelings) “I’m sorry this is a tough time.”
    (reassure) “I love you and we’re going to get through this together.”
    (distract) “You know what? Don has a new job. He’s really excited about it.

    Don’t remind them they forget
    Patient: “Joe hasn’t called for a long time. I hope he’s okay.”
    Don’t (remind) “Joe called yesterday and you talked to him for 15 minutes.”
    DO (reassure) “You really like talking to Joe, don’t you?”
    (distract) “Let’s call him when we get back from our walk.”

    Don’t question recent memory

    Patient “Hello, Mary. I see you’ve brought a friend with you.”
    Don’t (question memory) “Hi, Mom. You remember Eric, don’t you? What did you do today?”
    DO (short explanation) “Hi, Mom. You look wonderful! This is Eric. We work together.”

    Don’t take it personally!

    Patient “Who are you? Where’s my husband?”
    Don’t (take it personally) “What do you mean – who’s your husband? I am!”
    DO (go with the flow, reassure) “He’ll be here for dinner.”
    (distract) “How about some milk and cookies?” .. Would you like chocolate chip or oatmeal?

    Do repeat exactly

    Patient “I’m going to the store for a newspaper.”
    Don’t (repeat differently) “Please put you shoes on.”
    “You’ll need to put your shoes on.”
    DO (repeat exactly) “Please put your shoes on.”
    “Please put your shoes on.”

    Do eliminate “but”, substitute “nevertheless”
    Patient “I’m not eating this. I hate chicken.”
    Don’t (say “but”) “I know chicken’s not your favorite food, but it’s what we’re having for dinner.”
    DO (say “nevertheless”) “I know chicken’s not your favorite food, (smile) nevertheless I’d appreciate it if you’d eat a little bit.”

    Used with permission from Ellen Warner at Ageless Design
    __________________

  20. Roger C

    The importance of raising the awareness of Dementia cannot be stressed enough. It is wonderful to see this new initiative and for the Government to announce an increase in funding.
    My wife is an independent trainer to the adult social care sector and trains carers in Dementia Awareness and how they can improve their interaction with those who suffer all forms of Dementia.
    I have recently supported the Alzheimer’s Society by taking part in the North Memory Walk Marathon and raising funds for their cause.
    I think it is very important for those without Dementia in their family or friends network to support others who do which is why I was keen to put my name down for the Dementia Friends program.

  21. cher

    this is terribly important, and I am supporting this fully, I am the founder member of two pages on Face book, Dementia Awareness Day and Dementia Aware, where we try to make people aware of this terrible disease, so far it is working, we now have the P.M. taking notice and he has now interviewed the other founder member Norm McNamara, whom I’ve been promoting for two years regarding this.

    About time too is all I can say in this.. I work with people from the age of 55yrs upwards who have a form of dementia, and have Dementia Awareness Level 2 but am hoping a level 3 will come out. I’ve registered too.

    thankyou Cher

  22. Lynette

    This is a great initiative. I have registered my willingness to become a Dementia Friend (although I already have many friends with dementia. I’ve received an acknowledgement by email. What happens next?
    I look forward to hearing from you all.

  23. Heather Colbeck

    I work with Guinnes Care and Support, so have a professioanl interest as well as direct experience throgh the situations of several extended family members and friends families. i’ve registered and hope that many many others working in the field or not, will also do so. it stikes me that a return to some of the ‘niceties’ of a civilised society might sometimes help those living with dementia, eg taking time to explain, helping each other carefully, looking after those aorund us, not merely rushing for self fulfillment and self interest. There is such a thing as society and we shape how it behaves by our own actions.

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