People usually get a diagnosis of dementia from a memory clinic and it generally now takes many months to get one. Typically this tends to start by having a fairly short memory test at the individual’s GP surgery. If this test flags up concerns the GP will make a referral to the local memory clinic which will usually over a number of appointments (a) carry out more memory and other tests (b) request a CT scan (c) inform the individual of the diagnosis and (d) discuss and agree treatment options.
When my Dad received his diagnosis treatment options were discussed and agreed at the same appointment whereas when my Mum received her diagnosis (at a different memory clinic) her treatment options were agreed at a subsequent (telephone) appointment.
The main focus of Memory Clinics are to make a diagnosis and prescribe any relevant medication. They will arrange the prescriptions for that medication until the individual is “settled” on that medication at which point they inform the individual’s GP to continue prescribing the medication. Generally any additional support from the Memory Clinic is quite limited.
Given the length of the process that I have described above and the fact that you are clearly very close to your great auntie, I am wondering whether perhaps she may only be at the stage of having had the initial test at her GP surgery who has perhaps mentioned dementia and the need for a referral to the Memory Clinic and your great auntie has not taken in all of the information given.
I certainly think that it would be helpful if you could establish where in the dementia diagnosis pathway she is so that you are better able to support her. Unfortunately, whilst there is support out there services are often overstretched and the system is hard to navigate - hence the need for anyone with dementia to have a powerful advocate.
In terms of care planning, I am detailing below a weblink to a document regarding the personalised care and support planning that primary care (I.e. you great auntie’s GP surgery) should put in place as soon as possible after diagnosis and review at least annually. You may need to remind them of the need for this.
If at some point you request a care needs assessment for your great auntie that would also potentially result in a care plan. Please be aware that waiting list for care needs assessments can be outrageously long particularly where there are no obvious risk factors so in the case of this or any other service you think you may need you need to ask for it as soon as possible.
As your great auntie needs more support at home it would be worth applying for Attendance Allowance (AA) which is a non-means tested benefit. Your local Citizens Advice or Age Uk branch may be able to help you fill in the firm which is long and quite daunting. Getting AA can help some people get more Pension Credit and also means that you can claim for a Council Tax disregard for the person who has a severe mental impairment (unfortunate phraseology I know!). Where some one is living with dementia in a property by themselves and is in receipt of AA they would not then have any council tax to pay.
Regarding the stairs issue - it might be helpful to request an Occupational Therapist visit via your local council. If your great auntie is not using the stair lift now it will become increasingly hard for her to start to use it as time goes on and at some point as her dementia advances it may become unsafe for her to operate the equipment
Deterioration varies considerably between individuals and it may well be that with your support you great auntie is able to safely live in her own home for a number of years. As hopefully it will be a marathon not a sprint try to remember to pace yourself and look after yourself.
Best wishes!
