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Questions to ask

Debblaze

Registered User
May 22, 2018
13
Hello everyone

going to meeting soon for LO after tests and brain scan, pretty confident will be dementia, can anyone give me heads up as to what questions we should be asking at diagnosis and what to put in place regarding care planning, finances, benefits etc and the future.

thanks so much x
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,695
Kent
I think you might be disappointed @Debblaze

Because the progression of Denebtia is so unpredictable few people will be able to tell you what to expect.

If you can, it will help to ask your LO to agree to an LPA [ Lasting Power of Attorney ]. This will give you the right to act on their behalf, in their best interests if they become unable to act for themselves.

You can also apply for Attendance Allowance six months after diagnosis.

This factsheet may help;

https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/dementia-assessment

Also you might be able to find local support near you;

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

and this;

https://www.alzheimers.org.uk/get-support/your-support-services
 

Debblaze

Registered User
May 22, 2018
13
I think you might be disappointed @Debblaze

Because the progression of Denebtia is so unpredictable few people will be able to tell you what to expect.

If you can, it will help to ask your LO to agree to an LPA [ Lasting Power of Attorney ]. This will give you the right to act on their behalf, in their best interests if they become unable to act for themselves.

You can also apply for Attendance Allowance six months after diagnosis.

This factsheet may help;

https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/dementia-assessment

Also you might be able to find local support near you;

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

and this;

https://www.alzheimers.org.uk/get-support/your-support-services
Thank you. It’s not what to expect but more what to ask.

thanks again
 

Louise7

Registered User
Mar 25, 2016
1,789
With regards what questions to ask, this will depend on what is said and what you want to know. When Mum received her diagnosis it was just really a case of being told that she had Alzheimer's and that from the scan it seemed to be at an early stage. It was quite a short meeting just to provide the clinical findings and prescribe medication. I don't recall asking any specific questions as there wasn't really anything else to say.

You might find this carer’s guide useful. It contains loads of practical information about LPA's, benefits and getting help with care, and also has a section on understanding a diagnosis:

https://www.alzheimers.org.uk/get-support/publications-factsheets/caring-person-dementia-practical-guide?_ga=2.78037718.33203338.1579456010-945042157.1514915509
 

marionq

Registered User
Apr 24, 2013
6,034
Scotland
I take it you are based in England. The first thing to get sorted is POA which is worth doing for both of you. We used a solicitor but others have downloaded the forms and done it themselves. Please register it straight away then put it it on one side until you need to use it. This will save you a lot of trouble further along the way. Then apply for AA and council tax reduction both of which will help with the costs you will incur later on.

Be open to joining any groups available in your area so you are meeting people and keeping up with info and events. You don’t want to become isolated over time. Look at day centres in the area so that your partner can have some entertainment and stimulation and you can have a break.

Let us know how you get on.
 

Starting on a journey

Registered User
Jul 9, 2019
128
I was bluntly told to search out a care home as we would need one soon....however the medication worked and six months later mums easier to handle.

If I could go back in time I would ask them to clearly explain how the diagnosis had been reached and what stage they thought she was at.
 

dasntn

Registered User
May 21, 2014
29
North Devon
If your LO is under 65, it is PIP rather than AA that you apply for, and possibly Carers Allowance for yourself.

One question I would ask is "What ongoing help will we receive from the NHS moving forward?" - they tend to disappear after diagnosis in my experience.
 

Jaded'n'faded

Registered User
Jan 23, 2019
663
High Peak
I'd say it's important to take a look at your finances and work out whether you will - eventually - be self-funded or council funded. Basically if the person with dementia has more than about £23,500 you will have to pay for your own care if/when it is needed. Your house will be disregarded while you are living there but you may want to look at changing ownership to tenants in common and perhaps separating any joint accounts you have.

As others have mentioned, Power of Attorney, Wills and an Advance Directive are all things to sort out/think about. You can apply for Attendance Allowance (and get it!) before a diagnosis is made, if the person needs a lot of help/supervision. Age UK and others can help you with the forms if necessary.

At the meeting I would try to find out if any drugs are available to slow down the progress/relieve symptoms and also ask what will happen in terms of follow-up appointments, monitoring, etc. (I fear you will probably be discharged back to the GP after diagnosis - that's what usually happens but it varies a lot depending on where you live.)

Good luck - it's not easy.
 

Firecatcher

Registered User
Jan 6, 2020
21
I’m pleased you’re having a face to face meeting with the team. My Mum was diagnosed recently and my Dad was told by a nurse over the phone and then left to break the devastating news to my Mum.

I hope you’re given the time you need to process the information and ask questions. Don’t allow yourself to be fobbed off as it’s easy to feel intimidated or dis issued by professionals and they tend to sugar coat everything. This is a life changing diagnosis and people have a right to support and the opportunity for discussion.

Questions I would ask is the stage the disease is at, the likely progression and the level of support available particularly if you struggle to cope further down the line. You need to know who to contact if there’s a problem, the possible side effects of any medication and how to manage these.

As others have said apply for lasting POA for health and finances as soon as possible.
 

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