Dementia Awareness week with Dementia and Wellbeing Lead, Katherine Sweet

Each year for Dementia Action Week, the Alzheimer’s Society works with individuals and organisations across the UK to encourage people to act on dementia. Research has found that being in denial, and specialist referral times, are the biggest barriers to getting people to seek a diagnosis. 

The dementia diagnosis process can vary for everyone. For many people, getting a dementia diagnosis can be quite simple and takes just a few weeks. For others it can take much longer – sometimes more than a year. There isn’t yet a simple test for dementia. This means a diagnosis is normally based on a mixture of different types of assessment.

How might someone benefit from getting a diagnosis?

Timely diagnosis can help you make important decisions about treatment, support and care.

It can also help you plan for the future and access any benefits you may be entitled to. 

You might dread what the diagnosis will be, or think being diagnosed will not help your problems. But this is worth investigating – you deserve to know what is behind it and healthcare professionals are there to support you.

You may worry that people will see you differently if they know you have dementia. This can be particularly hard in communities where conditions like dementia are not well understood or accepted.

Remember that it is your decision who you tell about any diagnosis you have, and when and how you tell them.

Why should I speak to a GP or health professional?

In an Alzheimer’s Society survey, three out of five people with dementia wish they had got a diagnosis sooner. There are important reasons for this, which may help you if you are wondering whether to talk to your GP.

• Signs of dementia are not a normal part of getting older. Dementia is caused by diseases in the brain. If you’re worried about changes in your usual abilities that are affecting your everyday life, you should not accept this as a normal sign of ageing.
• Everyone’s experience of dementia is different. There are many different symptoms of dementia. The condition affects everyone individually, and symptoms change over time.
• Younger people can also have dementia. A lot of people think of dementia as something that only elderly people have. But it also affects people in mid-life. Around 1 in 20 people with dementia are younger than 65, so it is important that people of any age seek help if they are struggling.

It might not be dementia!

There are many reasons for symptoms that look like dementia. These include many conditions that can be treated, such as:  

• Depression or anxiety 
• Medication side effects  
• Problems with eyesight or hearing  
• Chest or urinary tract infections  
• Severe constipation  
• Thyroid problems  
• Sleep problems 
• Stress 
• Iron and vitamin deficiencies

How we can help?

“ExtraCare’s Dementia and Mental Wellbeing service is built on research undertaken in conjunction with the University of Bradford and Worcester University’s Association for dementia studies.

The result was a new approach to supporting people living with dementia and common mental health conditions and each village is fortunate to have a Dementia and Mental Wellbeing Enabler.” – Kate Sweet

Research in 2009 found that people who used the service:

• Rated their quality of life more positively
• Experienced greater feelings of inclusion and support in their community
• Experienced a sustained and significant reduction in symptoms and feelings of depression over time
• Were twice as likely to continue to live independently within their own home

The Dementia and Mental Wellbeing Enabler in each location are specially trained and know well the practical and emotional challenges of living with dementia, both for the person living with symptoms, and those close to them. 

With the help of an Enabler, you can be supported in finding interventions that reduce the impact of dementia and enable you to live as well as possible. These could include:

• Information about the condition and support in obtaining a diagnosis
• Understanding how symptoms can impact on daily living and ways to overcome these challenges
• Tailoring any care you receive to ensure it meets your needs as they change
• Educating and coaching those involved in your care and support 
• Identifying opportunities to be involved which will retain skills and help you remain connected 
• Ways to ensure your views and choices are heard and respected in the future

Symptom checklist

The symptom checklist listed here, developed by Alzheimers Society, was formally endorsed by the Royal College of General Practitioners (RCGP).

This resource could make a real difference in identifying those people who require a referral for a more detailed evaluation and diagnosis of their problems.

Anyone who is worried about possible dementia symptoms can use this checklist and share it with their primary care team.

Alternatively, any ExtraCare resident can refer themselves to the Dementia and Mental Wellbeing enabler in their location who will confidentially look at your individual situation, discuss and agree what might be helpful moving forwards.

For more information, click here.