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  • Writer's pictureThe Good Company People

A guide to getting a dementia diagnosis

Updated: 6 days ago

 

If you have any concerns about memory loss and disorientation, or notice subtle changes in your personality or someone close to you, speak with your GP who can do a short memory test, carry out a blood test or refer you for a brain scan (which rules out anything else). It is your GP who can refer you to the Memory and Dementia Assessment Service situated in Grove House in Crowborough (next to Crowborough Hospital).

 

A dementia diagnosis can be very difficult to cope with and accept, for both the person with dementia and those close to them. The feeling of loss, anger and helplessness are common or being in denial but there are upsides to getting an early dementia diagnosis:

 

  • Access treatments that slow down the progress of the disease (current treatment works best in the early stages)

  • Help you to understand the type of dementia and the way it impacts daily living and put in strategies to live well with dementia.

  • Access advice and support (including a dementia support worker from ESCC) to live independently for as long as possible.

  • Gives you time to prepare for the future and help plan ahead.

 

In December 2023, the service was suspended for 3 months due to funding cuts. In April 2024 the service resumed but according to members, there is a current waiting list of around 6 months. 

 

What is the process?

 

You will be sent a form to fill in to get some background information. It can be filled in by the person experiencing cognitive changes or a relative. There is certain information which they want to know which helps to form their diagnosis including:


  • Did the symptoms start suddenly or gradually and for how long?

  • Is it the long term or short-term memory affected (or both?)

  • You will also be asked to give examples of how things have changed (asking the same questions, confusion and difficulty with names / dates / times / faces) and the impact it has on the ‘ADL’s’ (Activities of Daily Living)  eg. personal care, shopping, cooking, household chores, gardening, managing medication and household finances and physical changes eg. speech changes, poor decision making, personality changes, changes in handwriting, auditory or visual hallucinations, changes to mood or increased anxiety.

  • They will ask about family history - is there dementia, Parkinson’s or mental health problems in the family?

  • They will want to know when the person left school, further education, career, marital history, children and age of retirement which are all contributing factors.

  • They will ask about past medical history, current medications, smoking history and alcohol history (too much alcohol is very bad for your brain health)

  • They will want to know about your social history (which is a big indicator) including family and friend networks of support, living arrangements, volunteering and social life. 

  • From a risk perspective they want to know if there have been any risks at home, wandering or problems with driving. 

 

You will be invited to the Memory Clinic to meet an assessor for a relaxed conversation about how you are coping with your daily activities, it is often encouraged to take a family member or friend for support. You may be invited to participate in a ‘quiz’ which contains a series of questions and tasks to help determine how you’re doing cognitively at the moment.

 

You will be referred for a CT Scan by the memory service to produce images of the brain. This involves lying in a scanner for 10-20 minutes and you may be asked to hold your breath for a short time. CT scans are useful for ruling out other conditions which are similar symptoms to dementia but they can also show:


  • Any vascular events (stroke) 

  • Brain shrinkage (known as ‘atrophy’) and blood vessel changes

  • Signs of a brain tumour or build up of fluid in the brain. 

 

Alzheimer's Research have very useful information on brain scans here:

 

Once the memory service has the results, the background and the CT scan results there will be a discussion and review in the diagnostic clinic with medic involvement to determine any diagnosis. Depending on the severity of the diagnosis and patient preferences, they might give you the diagnosis over the phone or in person.

 

Professor Naji Tabet who holds an honorary consultant post at Sussex Partnership NHS Foundation Trust is the lead medic to the Memory Assessment service and may see some patients himself where there are concerns around diagnosis. You could not be in better hands. 

 

Around 20-25% of patients do not get a dementia diagnosis but are diagnosed with Mild Cognitive Impairment (MCI) - acknowledging there is an impact, or Age Related Cognitive decline. The good news is there is a window to potentially delay or avoid further cognitive decline, lifestyle is important and advice can be given over this. You may be invited back for another assessment 6-9 months later to explore if there have been any changes. 

 

Once you have a diagnosis, the team will assess your suitability for medication. One of the things they will check is your pulse as some of the medication may not be suitable if you have a slow heart rate. 


You will be under the Memory Assessment Team whilst you get used to the medication (they call this ‘dose titration’) and once they are happy, they will close your case and refer you back to your GP and the Dementia Support Service (otherwise known as CBET ‘Carers Breaks Engagement Team).


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