Early onset Alzheimer’s

[Trickywoo]

My wife was diagnosed with early onset Alzheimer’s a few weeks ago at the age of 61 but my wife struggling about 3 years ago when she had to take early retirement. At this point the doctor was treating her for depression but I suspected something wrong with her memory! I asked the the doctor to give her a memory test to which Carole passed. After 18 months had passed I got Carole to take another memory test with the same doctor, this time Carole didn’t pass!! With the doctor on the right track she was referred to the memory clinic and the rest is history!
We are at the early stage of our journey but are struggling to find anyone in our local community who is a similar position. Been to a couple of support groups but these seem to cater for older people. I have had a few more contacts given to me so I will explore these also.
I’ve done an online course for living well with dementia and reading books to learn more about this disease and learning new techniques to try out. Also here.

 

[jaymor]

Hi and welcome to Talking Point.

My husband was diagnosed at 62 and we were lucky because his Community psychiatric Nurse started a group for early onset dementia. Sadly cuts in finance brought that to an end.

https://www.alzheimers.org.uk/find-support-near-you

Pop your post code into the above link and find out what there is available in your area.

You will find lots of support and advice here from members who know how you feel and are more than happy to share their experiences of solving a problem or give you strategies to deal with those that can’t be solved.

 

[karaokePete]

Hello @Trickywoo you are welcome here and I hope you find the forum to be a friendly and supportive place.

My wife is also early onset and I encountered the same issue as you - some support is geared to an older generation.

Do take a good look around the site as it is a goldmine for information. When I first joined I read old threads for information but then found the AS Publications list, which covers all aspects of dementia and dementia care

https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

You will see that there are Factsheets that will help with things like getting care needs assessments, deciding the level of care required and sorting out useful things like Wills, Power of Attorney etc.

Now that you have found us I hope you will keep posting as the membership has vast collective knowledge and experience.

 

[Philbo]

"My wife was diagnosed with early onset Alzheimer’s a few weeks ago at the age of 61 but my wife struggling about 3 years ago when she had to take early retirement. At this point the doctor was treating her for depression but I suspected something wrong with her memory! I asked the the doctor to give her a memory test to which Carole passed. After 18 months had passed I got Carole to take another memory test with the same doctor, this time Carole didn’t pass!! With the doctor on the right track she was referred to the memory clinic and the rest is history!
We are at the early stage of our journey but are struggling to find anyone in our local community who is a similar position. Been to a couple of support groups but these seem to cater for older people. I have had a few more contacts given to me so I will explore these also.
I’ve done an online course for living well with dementia and reading books to learn more about this disease and learning new techniques to try out. Also here.

Hi and welcome to the forum.

I am 5 years into the "journey", caring for my wife who was diagnosed with fronto temporal dementia (FTD) in Jan 2014, then aged 63. It had taken a couple of years of denial, head in the sand etc, followed by another 9 months or so from first raising concerns with her GP to getting to the memory clinic. So looking back to the earliest signs, I reckon she has had dementia since around 2010?

I sort of tried to carry on as "normal" for the first year, then realised I had to start reaching out for whatever help I could find. We started with attending a monthly dementia coffee morning run locally, where I too found that it catered for a much older group of people. Nevertheless, though my wife didn't really get much from it, the lovely people there were quick to share their experiences, knowledge and recommendations on where to go for support.

I don't want to take over your thread, but I'd be happy to offer any advice, so just let me know. You will find that the lovely folk on this forum have a vast wealth of real life experience, so generously given, which I for one, have found invaluable.

Best wishes
Phil

 

[Maggiejigs]

Hi - my husband was diagnosed with Frontotemporal Dementia last Dec and like you I am struggling to find out what is out there in the way of support/groups for him and me. Like you I wanted to find someone in my area going through similar circumstances but there are no FTD support groups in my County and am awaiting dates for meetings in next door County or London.

Don’t know about your Post Diagnosis Meeting but ours was with a Therapy Technician who just went through and handed us a load of information leaflets which I have been ploughing through. Fortunately we have an Admiral Nurse in our area and I am seeing her next week and I feel she will be able to guide me. Maybe you have one in your area - I know they are thin on the ground and some Counties have none

There is a lot of help and useful advice on this Forum, good luck.

 

[Trickywoo]

Hi and welcome to the forum.

I am 5 years into the "journey", caring for my wife who was diagnosed with fronto temporal dementia (FTD) in Jan 2014, then aged 63. It had taken a couple of years of denial, head in the sand etc, followed by another 9 months or so from first raising concerns with her GP to getting to the memory clinic. So looking back to the earliest signs, I reckon she has had dementia since around 2010?

I sort of tried to carry on as "normal" for the first year, then realised I had to start reaching out for whatever help I could find. We started with attending a monthly dementia coffee morning run locally, where I too found that it catered for a much older group of people. Nevertheless, though my wife didn't really get much from it, the lovely people there were quick to share their experiences, knowledge and recommendations on where to go for support.

I don't want to take over your thread, but I'd be happy to offer any advice, so just let me know. You will find that the lovely folk on this forum have a vast wealth of real life experience, so generously given, which I for one, have found invaluable.

Best wishes
Phil

 

[Trickywoo]

Hi - my husband was diagnosed with Frontotemporal Dementia last Dec and like you I am struggling to find out what is out there in the way of support/groups for him and me. Like you I wanted to find someone in my area going through similar circumstances but there are no FTD support groups in my County and am awaiting dates for meetings in next door County or London.

Don’t know about your Post Diagnosis Meeting but ours was with a Therapy Technician who just went through and handed us a load of information leaflets which I have been ploughing through. Fortunately we have an Admiral Nurse in our area and I am seeing her next week and I feel she will be able to guide me. Maybe you have one in your area - I know they are thin on the ground and some Counties have none

There is a lot of help and useful advice on this Forum, good luck.

Thank you, early days I know but i’ve Also taken early retirement so I have plenty of time on my hands to organise myself.

 

[Trickywoo]

Thank you, early days I know but i’ve Also taken early retirement so I have plenty of time on my hands to organise myself.

 

[Trickywoo]

Hi and welcome to the forum.

I am 5 years into the "journey", caring for my wife who was diagnosed with fronto temporal dementia (FTD) in Jan 2014, then aged 63. It had taken a couple of years of denial, head in the sand etc, followed by another 9 months or so from first raising concerns with her GP to getting to the memory clinic. So looking back to the earliest signs, I reckon she has had dementia since around 2010?

I sort of tried to carry on as "normal" for the first year, then realised I had to start reaching out for whatever help I could find. We started with attending a monthly dementia coffee morning run locally, where I too found that it catered for a much older group of people. Nevertheless, though my wife didn't really get much from it, the lovely people there were quick to share their experiences, knowledge and recommendations on where to go for support.

I don't want to take over your thread, but I'd be happy to offer any advice, so just let me know. You will find that the lovely folk on this forum have a vast wealth of real life experience, so generously given, which I for one, have found invaluable.

Best wishes
Phil

 

[LynneMcV]

Hi @Trickywoo and welcome,

I also understand the difficulties involved in finding services for younger people as my husband was 58 when he was diagnosed.

The search link provided above by @jaymor was a godsend when I first used it as it brought up information on some great groups that I hadn't been aware of. I was lucky that there was a local group for younger people with dementia which my husband was able to attend alone for about a year - but to be honest, I soon found out that they didn't do anything any different there than what they did in the various other memory cafes we attended for all ages.

In the early years I also broadened my outlook to include groups which were not dementia specific. We found a fun choir, various community events and a disability social group via a variety of local churches (you do not need to be a church member). Local libraries were also a hit with social coffee mornings, short but interesting talks on a range of subjects and fun quiz sessions. The local garden centre was a good place to visit too, if only to just look rather than buy - but it also held monthly short talks about nature in general which were very interesting.

A local coach tour company provided a choice of day trips and a small local amateur theatre was great to visit from time to time as it was less overwhelming than the grander, busier theatres.

With the dementia specific groups I did have days when I felt like I would scream if I heard one more rendition of 'Roll Out the Barrel', 'We'll Meet Again' or 'White Cliffs of Dover'. However, when I took a step back I soon realised that my husband was actually enjoying the entertainment and age was not, and never had been, a barrier to friendships for him, so he was not at all aware that he was the youngest there. In fact, looking back, I think the old songs and reminiscence sessions were something of a comfort to him in that it brought back memories of his parents' and grandparents' generations and the things that were heard and seen around the family home when he was growing up.

The older ones found joy in talking to him as if he were a son and he enjoyed their company. It was a real family atmosphere.

Having said that, we did not completely succumb to the standard activities run for the older folks. I started to buy materials and activities more suited to my husband's interests to use at home - but I would also take them along to the groups we attended so that he had things to do there. The organisers soon came a-looking at our treasures and started to purchase similar things for any younger users that might join their groups - so in a way, by attending the groups rather than avoiding them as out-of-touch with our generation, we helped make them more relevant to a wider age group.

It was a win win situation, I was in social contact with other carers, my husband was happy - and the services were adapting.

i wish you success in finding some great opportunities in your area

 

[PalSal]

Hello, welcome to Talking Point. Happily this site now has a subgroup for those younger people and their carers. When I came here in 2o11 that was not the case. But I was so grateful to have as last found this site after many many years of handling our situation on my own. My husband was 49 when given the diagnosis for Early Onset Alz, where he had been systematic for about 4 years before being diagnosed. It was devastating to our lives on many levels and I was quite depressed and overwhelmed by our situation. Eventually I accepted the challenge of being provider, carer, housemanager and finance manager for all aspects of his life and our life together. Luckily, it was a slow process, and I just gradually took on more and more tasks and duties.
My husband functioned for many years with the help of Aricept, which was difficult for him to tolerate in the beginning but he took it for many years. Then he just refused to take it any longer.
But for many years, he did laundry did a little grocery shopping and helped where he could around the house. He stayed at home while I continued to work and he stayed at home alone, but from 2015 he can no longer be alone. He eventually lost his drivers license probably in 2015. From that time he has lost more and more functionality. It was a crushing but necessary decision his doctor helped the family to take, We are now almost 17 years post diagnosis.
I have hired people to walk with him for the last 5 years or so. He would get lost and as he was a young man needed to stay physically fit. This has been an excellent decision as it allowed for him to do what he loves hike in the mountains at least three times each week for 3 to 4 hours.
The side benefit of him having a hired walking partner is it made it easier to introduce, helpers/carers whom I call mansitters for evening when I wish to go out. That was then as easy transition for us. I would enjoy you to introduce others to help as soon as possible...so you can continue doing some activities you love on your own.

 

[Trickywoo]

Hi @Trickywoo and welcome,

I also understand the difficulties involved in finding services for younger people as my husband was 58 when he was diagnosed.

The search link provided above by @jaymor was a godsend when I first used it as it brought up information on some great groups that I hadn't been aware of. I was lucky that there was a local group for younger people with dementia which my husband was able to attend alone for about a year - but to be honest, I soon found out that they didn't do anything any different there than what they did in the various other memory cafes we attended for all ages.

In the early years I also broadened my outlook to include groups which were not dementia specific. We found a fun choir, various community events and a disability social group via a variety of local churches (you do not need to be a church member). Local libraries were also a hit with social coffee mornings, short but interesting talks on a range of subjects and fun quiz sessions. The local garden centre was a good place to visit too, if only to just look rather than buy - but it also held monthly short talks about nature in general which were very interesting.

A local coach tour company provided a choice of day trips and a small local amateur theatre was great to visit from time to time as it was less overwhelming than the grander, busier theatres.

With the dementia specific groups I did have days when I felt like I would scream if I heard one more rendition of 'Roll Out the Barrel', 'We'll Meet Again' or 'White Cliffs of Dover'. However, when I took a step back I soon realised that my husband was actually enjoying the entertainment and age was not, and never had been, a barrier to friendships for him, so he was not at all aware that he was the youngest there. In fact, looking back, I think the old songs and reminiscence sessions were something of a comfort to him in that it brought back memories of his parents' and grandparents' generations and the things that were heard and seen around the family home when he was growing up.

The older ones found joy in talking to him as if he were a son and he enjoyed their company. It was a real family atmosphere.

Having said that, we did not completely succumb to the standard activities run for the older folks. I started to buy materials and activities more suited to my husband's interests to use at home - but I would also take them along to the groups we attended so that he had things to do there. The organisers soon came a-looking at our treasures and started to purchase similar things for any younger users that might join their groups - so in a way, by attending the groups rather than avoiding them as out-of-touch with our generation, we helped make them more relevant to a wider age group.

It was a win win situation, I was in social contact with other carers, my husband was happy - and the services were adapting.

i wish you success in finding some great opportunities in your area

 

[Trickywoo]

Thank you

 

[WA123]

My wife was diagnosed with early onset Alzheimer’s a few weeks ago at the age of 61 but my wife struggling about 3 years ago when she had to take early retirement. At this point the doctor was treating her for depression but I suspected something wrong with her memory! I asked the the doctor to give her a memory test to which Carole passed. After 18 months had passed I got Carole to take another memory test with the same doctor, this time Carole didn’t pass!! With the doctor on the right track she was referred to the memory clinic and the rest is history!
We are at the early stage of our journey but are struggling to find anyone in our local community who is a similar position. Been to a couple of support groups but these seem to cater for older people. I have had a few more contacts given to me so I will explore these also.
I’ve done an online course for living well with dementia and reading books to learn more about this disease and learning new techniques to try out. Also here.

Hi @Trickywoo. We're in a similar situation to you although I'm fairly sure we're in a different part of the country. I've messaged you and if you go to the envelope at the top of your page you'll see the message.