What are the experiences of those caring for relatives with young onset dementia?

[LDS]

Hi my name is Laura and I am currently studying for a Masters in occupational therapy at Brighton University and have decided to carry out my dissertation on the experiences of relatives with young onset dementia (those under the age of 65).

As interviewing people with or caring for people with dementia raises certain ethical issues I am unfortunately unable to carry out primary research (e.g. interviews). In an attempt to overcome this I have proposed to look at various Internet blog sites to explore peoples experiences.

Like all areas of research I am required to seek people's permission to use their blogs in my study. To ensure complete anonymity for the ‘bloggers’ used in my research I will not enclose any information about the online sources/websites used during the research nor will I identify the name or location of any of the ‘bloggers’ used in the study.

The aim of this study is to explore and understand the experiences of those caring for relatives with young onset dementia and to see whether there is a need for specialist age appropriate services for this client group.

My interest in Dementia stems from my mother being diagnosed with dementia nearly two years ago at the age of just 56! Due to her age the condition took a good couple of years to diagnose, as her symptoms resembled other conditions such as the menopause or depression. I am happy to share my experiences but am also keen to hear the experiences of others.

Please let me know if you would be willing to be part of my research and allow me to use your experiences of having relatives with young onset dementia. You can do this by responding to my post, providing me with you user/blogger name to allow me to use the experiences that you have posted on this site in my research.

Alternatively you can write your experiences as a reply to this thread.

You are not required, nor do I need any personal information about yourself.

If you have any queries about my research please do not hesitate to ask.

Many thanks
LDS

 

[KatherineW]

Just to let members know that Laura has permission from the Society to post on TP in relation to her project.

Katherine

 

[Grommit]

Hi there Laura.

Read your post with interest but have to admit to being computer illiterate as far as "blogs" are concerned. Haven't a clue what they are.

I am willing to assist though if you can point me in the right direction or need to know the answers to specific questions.

My wife was also diagnosed at the age of 56.

 

[LDS]

Hi there thank you for showing interest in my research.

Sorry for any jargon used. So basically I would like people to tell me about their experiences of young onset dementia by either replying to this thread or telling me if you have already written on other forums on this site so that I can read the information.

I want you to tell me abit about your experience since diagnosis e.g. how long it took for diagnosis, the service you and your wife have recieved, any improvements to the services that you feel would benefit you and your wife, how it has affected you and your family and how you think your wife's age has impacted on you, your family (was she in work at the time of diagnosis) and anything else you would like to share.

I hope this has been useful.

let me know if you would like any other information

 

[LDS]

To all users,

To make things easier please reply to this thread with your experiences of young onset dementia. I am interested in any aspect of your experience and am not looking for anything too specific. I have given some examples on my previous post.

As dementia is often thought of as an older persons illness I would like your thoughts and opinions on how your relative being diagnosed at such a young age has affected you and your family and the level of support you have recieved and what changes you think would benefit you and your family or what you feel has already been beneficial.

Please let me know if your need any other information

Laura

 

[sad nell]

Laura I would willingley help, could you ask a list of specific questions for us to reply to, maybe multiple choice, which we can just tick think it would give you usful info from a wide range of early onset sufferes, my husband was about 54 when diagnosed is now 60 cannot speak, immobile, doubley incontenent, cannot feed or take care of any personal things for himself. He still looks about 45 and very handsome this cruel desease reaches out and destroys the lives of those it touches. I will willingley give you any help I can, Trev still lives at home .Pam

 

[Grommit]

Ok and thanks for the clarification.

I will deal with the effects of diagnosis on the immediate and wider family first.

Prior to diagnosis my job entailed extensive travel and weeks away from home. It was an interesting job and one that I enjoyed due to it's variety and entailed the interpretation of regulatory affairs relating to the electrical lighting industry. Like most busy people, I had no knowledge of Alzheimers disease and understood it to be something that affected older people. It was not until diagnosis that I started to read up about the disease and was devastated to learn of the effects and the eventual prognosis.

It was made clear to me that, in my wife's case, the outlook was not only poor but it would also be short and it was the opinion of the Consultant Psychiatrist that termination would occur within 5 to 7 years. His last words to me, before handing my wife's case to the Community Mental Health Team, were, "You are young (56), do you want to spend the next few years watching someone fade away before your eyes? In a few months time she will not know you so put her in a home now and go away and enjoy yourself. We do not know what causes the disease, we cannot cure the disease and we cannot prevent it. Next year, either you or I could have it."

The decision then was mine and needed to be made fairly quickly in order to map out which route to take, mental home or home care. Very difficult decision to make after having received a shock like that. Those sorts of decisions need consultation with family after trying to take on board the information available.

At this stage, I would like you to understand that I was brought up in the 1950's, in a working class family and in a social environment where mental illness carried a stigma. Mentally ill people were hidden away,the face at the window, dribbling and vacant eyed. The carers for mentally ill people were looked on with suspicion, as something odd and not quite right themselves. It does not matter how hard you fight it, how much understanding of mental illness you have, as a carer, you still need to put that nurtured stigma on one side.

No one would or could tell me whether Jean was going to finish up in a wheelchair, waving her arms about and shouting maniacally at everyone and everything passing by. The amount of information needed to make the decision was mounting and each passing day saw more leaflets, pamphlets and websites to be explored.

The reaction from my Mother and Jean's Mother was total denial in both cases. "There is nothing wrong with her" became the whole of the law as far as they were concerned.

My children were devastated, my daughter initially and my son later when he realised that his Mother no longer recongnised him or remember his name.

Gradually, I came to realise that, if I did take on her care, I was on my own. Parents were too old to help and my kids had their own lives to lead, families to raise and mortgages to pay.

So the decision process moved to the practicalities. What would I need in terms of finances, changes to the home and changes to myself and my working life? Initially, I intended to keep on working and bring carers in to see to Jean's daily feeding and toiletting. This consisted of one visit per day to make her a sandwich and a cup of tea and to ensure that she was safe and not wandering.

This failed miserably. Police intervention was required on 3 occasions when she went missing. The food made for her was just left for her and she had no understanding of what to do with it.

I cut down my hours at work and more carers were brought in to sit with her for 4 hours a day. Violence broke out when Jean escaped from the house and went and sat in the middle of a busy road, refusing to budge.

After a two year fight with the Council, I managed to get Direct Payments to the extent where I could stop work and take over as main and sole carer.

I will leave it at this point and wait for your comments. Do you need clarification of anything or do you need me to go down different routes?

If not, I will continue or not as you wish.

 

[LDS]

Thank you for your replies so far, Grommit your entry has been really helpful. I am sorry to hear that you were told that at the diagnosis stage, that must have been difficult to hear, how did you feel about told in such a way? and how do you think the diagnosis and information given to you at the time could have been different to that which you recieved?

I am also interested to find out about the support you and your wife were given form diagnosis until now and how appropriate you feel those services were/are, offering any suggestions of possible improvements that could be made to meet the changing needs of you and your family.

Pam thank you for your response. My research is looking for peoples experiences so I am trying to keep the responses as descriptive as possible as opposed to quantifying data. I understand this is more time-consuming than ticking boxes but if you have time I would really appreciate your help.

There is no right or wrong answers, this is a research piece about people's experiences which are all very unique. Here are some suggestions about areas to discuss if it would help;

-your experience of the diagnosis process (how long it took to diagnosis, did your husband's age affect this, what support were you, your husband and the rest of your family offered!)

- How the diagnosis affected your personal/social/work life

-Was your husband working at time of diagnosis? If so how did the diagnosis change this and how were you and your husband supported, were you given advice/support.

-What services/support do you all recieve

-Are the services if any that your husband attends appropriate for his age.

I hope this goes some way to help you structure your response.

Many thanks
Laura

 

[Bastan]

Dear Laura

I am willing to tell our experience. I have started a blog under my username name Bastan. I have edited it tonight for you. I will write more tomorrow evening. Hope it helps with your research.

regards Bastan

 

[ceetee]

Dear Laura,

feel free to use my username CEETEE to look through all my posts and use whatever you feel important. My HB was diagnosed last November at age 60 with Alzheimer's although that diagnosis was given prior to scans and tests. We are still waiting to go through the results with someone. You can read in some of my posts how frustrating the diagnosis and appointments stage is. My HB lost his job due to "misconduct" after disciplinary procedure in May last year, so half a year before diagnosis. That did not help our situation as I had and have to fight to prove it was part of the illness for insurances, benefits etc. We still do not receive any benefits or support and I am not at all impressed with the system. The whole thing is causing severe finanncial hardship for our family...and no one wants to or can help because I earn too much and work full time.Most things are means tested and only look at the gross income. Families with younger sufferers fall through the net. I have to now pay mortgage and full-time childcare for our 4-yr-old son on my own (I am a bit younger than HB). That uses all of my wages up...and I still have not paid any bills, petrol or shopping. Why does nobody look at your outgoings??? I find the whole situation rather stressful and frightening. I have to fight so much and have not got anywhere so far apart from into debt. Doctors keep talking about medication and day care at every appointment...but nothing has come of it so far. We have not got a social worker yet. Next appointment iis Monday...still hopeful something will happen then. I do hope that your research and work could highlight some of the injustices of the system especially for younger people with the illness. It can well and truely ruin the lives of whole families. Hope I will be strong enough to avoid that for ours...???

Best wishes, Ceetee.

P.S. Feel free to PM me if you need more detail.

 

[icare2]

medication changes !!

in my experience this is the most important !!
as we all know everyone is so different in this dreaded illness,and even the most experienced consultant will prescribe you some drug, that they have had some success with, but !!its just like any drug, it will either kill you or cure you.. e.g. penicilian, fortunately it cures more !!..
but with AD you have no response from the taker of it as they cannot communicate with you most times,and usually the response from medical staff, is that it usually takes from 2 or 3 weeks too kick in, as most of them dont understand how that certain patient given the drug has reacted on it, till they get a report !! from the carers that are with them, what i will say if its not broke dont try to fix it!! as it can lead to more problems..

 

[LDS]

Thank you all for your responses so far! Just a quick reply to say I am not ignoring any of your responses, I have had a chance to read you experiences you have proved me with which are great. I am currently on placement but will be continuing with my research very soon so will be in touch shortly.

Laura

 

[Necion]

Hi LDS, please feel free to use my posts/blogs if they are any use.
Still fighting for diagnosis here, I just want to find doctors who know more about FTD than I do!!!!!!

Feel free to pm me if there is anything more you want to know.
Lots of love, Necion. xx

 

[Fastcats]

Hi LDS, please feel free to read my blogs and posts. My mam has vascular dementia, she is 61, she fell and broke her pelvis last August, that then brought on the Dementia within 1 month, she is now incontient, does not know who I am some days, relives the past constantly, unable to wash, dress etc. If you need any more information please let me know.
Regards
Alyson

 

[robertjohnmills]

Our Story

Hi LDS
I am not sure whether this is of interest to you in doing your Masters for Occupational Therapy but you are more than welcome to use my blogs, threads or Private Message me if you want.

My Civil Partner (aged 43yrs) was diagnosed with AIDS Dementia Complex, now more formally known as HIV Related Brain Impairment (HRBI)in 2003. It has many similarities to Dementia in terms of short term memory loss, personality changes. It tends to differ in quite sudden onset and nowadays is not as progressive due to the improved Anti retroviral drug therapies available.

Much of the journey; greif, anger and frustration with poor services etc are the same as others who suffer either as a relative or themselves. I joined AS Talking Point as it was the only place where I could truly find empathy from those I knew understood.

In brief my Partner, was initially fortunate to be referred to a London charity which specialised in the disorder and he spent nearly a year as an in-patient whilst we sorted out his needs. He was discharged and ever since then we have had an uphill fight with medical professionals, social services and community services.

In the 8 years since he left nothing has really improved, the local mental health service will not take his care management stating that he is "too Young" to access their Dementia services and Long Term team clients and that short term team clients of his age do not have Dementia service! And that's it

We are unable to access Respite because he is not a local mental health client! The GP service is beyond the pale with a referral to specialist taking 4 months from having left it complete in Surgery to them sending it off! No aplologies there either!

The local Community services and social services demand a fortune contribution and backpay of £11,000 (because they forgot to bill us) I fought with Council Tax for discount and they insisted he was not "Disabled" and we were not entitled to discount. Now I discover he is in their jargon "Disregarded" which does entitle us to discount. Consequently I have to get this overpayment back but the GP has filled the form in wrong again!! As you can imagine my own health has declined because of the stress of trying to chase up and sort out my Partner's care and run a job and a home.

It never seems to end and I think that Dementia gets the worst deal in terms of healthcare from the NHS. I have met with several Managers from time to time over the years and all I get is a sympathetic smile.

On a more personal note LDS; I miss him, My Partner I mean. We were young and still are (only just turned 50) and here we sit our social life has collapsed, I daren't take him out on public transport or to a Restaurant. He will not sit for 5 mins. The last Hotel we stayed in we left early before we were thrown out because of his behaviours. We feel life is over and at times want to end it all. If it were not for the very small things that make it worthwhile. Many of our friends have gone. His family were not close to start with and frowned upon him being Gay. Now this has alienated them altogether.

Well that's enough for now. But dont hesitate to contact me if you need more. Robert

 

[rosaliesal]

There are people out there who do care what happens to you.

The system is full of people trying to cope both carers and those in authority trying to cope with tiny budgets rules and regulations. It makes my blood boil. Alzheimers is an illness just the way cancer is. How dare the government expect people to cope like this. It is hard to believe we are in the 21st century.

Being gay does not make you an alien. You are a human being with feelings and deserve to be treated respectfully. I am glad to say my family have all been brought up in the right way. It is not about sex, it is about being a decent human being and you qualify for this. Take a huge pat on the back for all your care and love. You must be worn out. I got to breaking point before I shouted for help and after 6 years, when I finally did, I realized that I should have done so earlier. Now my husband and I have a life on the two days mum goes into a day care centre. To my absolute amazement she has gained a life too with the laughter she gets there. Support is what you need, not just physically but mentally. Have you a group you can attend to get help and advice. It is not wrong for you to take a bit of time out for yourself to relax and unwind. You will become stronger when you feel happier. How I wish I could wave a magic wand to bring you both happiness. All I can say is that you have reached that point where you need to get answers and get them now before you run yourself into the ground. You are not weak by asking nor a failure. Life dealt you both an enormous blow. Try getting an appointment with your MP if the system fails you. Make yourself strong by whatever means it takes, think things out clearly, then make a plan of attack so you can make changes to benefit you both. Hoplessness is a horrid feeling....how do I know....I have had that dark feeling like being in a huge black hole that will never give me a glimmer of light and hope. You sound like you are on the edge and though you have sad things to deal with you will be able to fight the fight and get some relief if you take good care of yourself too, not just your partner. Your partner will suffer if you go to pieces. Bring as much into your life as you can that makes you smile, a DVD, comedy programme, walk in the park, sit in the sun , look each day for some thing to smile about. The blackness will lift, if only a bit here and there if you allow yourself to see some good in the world. Positive thinking can go a long way to helping to heal the heart....the more you practice, the more you will heal. Make a cake, invite friends round...keep on thinking of good things to do. The more reflection is on the gloomy side the blacker things look. I know it is not easy but try. After all, worry is the biggest killer, worrying about something is almost as bad if not worse than the actual event. When you start to feel better you will see that it is worthwhile finding and giving yourself happy moments.It is about distracting the mind.

 

[LDS]

Thanks you for all your responses so far, but before I am able to use your experiences in my research I will need to complete a consent form. So please email my at lds15@uni.brighton.ac.uk so that I can send you the form if you are still willing to participate in my research.

Please also see my new Thread on the research post titled
'the OCCUPATIONAL experiences of those caring for relatives with young onset dementia' for updated info.

My research proposal is still the same as before, however I have re-worded the title slightly so that I can understand your occupational experiences rather than just your experiences.

Kind regards

Laura

 

[LDS]

Dear all

The deadline for my dissertation is drawing near and unfortunately have not yet received consent forms that allow me to use your experiences in my research. I am able to use either experiences you write on my blog or the experiences that you have already posted about on your own blogs. I know many of you have agreed that i am able to use your experiences in my research, but I do need the consent forms before I can do this. I can email you the consent form which you just need to type your name and email it back to me so I can include your experiences in my research.

Kind regards

Laura