Dementia Action Week run by the Alzheimer’s Society is an awareness week to encourage people to ‘act on dementia’. This year’s theme is diagnosis. For more details click here.

There are currently around 900,000 people with dementia in the UK. This number is expected to rise sharply in the coming years. Dementia can affect a person at any age, but it is more commonly diagnosed in people over the age of 65 years, with the condition affecting 1 in 6 people over the age of 80.  If somebody develops dementia before the age of 65, they are described as having young onset dementia.

Dementia is an umbrella term for a range of progressive conditions that affect the brain. There are over 200 subtypes of dementia, and it can also be a secondary condition of another disease, such as Parkinsons. The most common types of dementia are Alzheimer’s disease and vascular dementia.

Regardless of which type of dementia is diagnosed and what part of the brain is affected, each person will experience dementia in their own unique way.

Signs that could indicate a person has Dementia

Memory problems - people with dementia might have problems retaining new information. They might get lost in previously familiar places and may struggle with names. Relatives might notice the person seems increasingly forgetful, misplacing things regularly.

Cognitive ability - people with dementia may have difficulty processing information. This could be their perception of time or a place, for example, getting up in the middle of the night to go to work, even though they’re retired. Also, their concentration could be affected. There may be a difficulty when shopping with choosing the items and then paying for them. For some people the ability to reason and make decisions may also be affected. Some may get a sense of restlessness and prefer to keep moving than sit still; others may be reluctant to take part in activities they used to enjoy.

Communication - people with dementia may repeat themselves often or have difficulty finding the right words. Reading and writing might become challenging.

Changes in behaviour - they might experience changes in personality, mood swings, anxiety, and depression. They can lose interest in seeing others socially. Following and engaging in conversation can be difficult and tiring, and so a formerly outgoing person might become quieter and more introverted. Their self-confidence might also be affected.

Differences engaging with their surroundings – people with dementia can experience changes in vision and hearing as their brain processes information in a different way. People can view everyday items in their home and in the outside world in a different way such as walking round the rug in the living rooms, becoming hesitant getting into the car, being apprehensive stepping off the kerb. Some people can find noisy places very disturbing and can find it challenging to participating in large group conversations.

Everybody assumes the first sign of dementia is memory loss, but this not always the case. The other signs described above can change earlier. The changes can be intermittent and vary in their severity. People living with dementia can often describe a feeling of mist coming over them and then lifting. These symptoms of dementia gradually get worse over time. How quickly this happens varies from person to person and some people stay independent for years.

If you or your loved one are showing symptoms associated with dementia it is important to contact your GP. There are many conditions that have similar symptoms to dementia, including, infections, thyroid problems, vitamin B12 deficiency, sleep apnoea, stress, anxiety, and depression.

Dementia Diagnosis and Next Steps

To establish if dementia is present, a GP will take a medical and family history of the person and will screen them for mental health and cognitive issues by asking questions, testing concentration, short term memory, mood, and behaviour changes. The GP may then request blood tests, an MRI or CT scan to examine the structure of the brain or request a chest X-ray to check for any chest conditions. They may also refer the person to a memory service/clinic, or to a specialist for further investigation and assessment.

If a diagnosis of dementia is given, the GP should then ensure that the person with the diagnosis and their family are made aware of any specialist advice and support services in their area, as well as referring them for further assessments and treatments that may help.

Dementia UK have produced a next steps checklist, to help in the early days after your family member has received a diagnosis of dementia, click here for more information. If you don’t have access to the internet, you can call the Admiral Nurse Dementia Helpline on 0800 888 6678 or email helpline@dementiauk.org.

Being diagnosed with dementia can understandably cause distress and a feeling of hopelessness, and some people may feel anxious or depressed. It may be that the person is finding it difficult to adjust emotionally. Equally, the dementia changes happening in the brain can make it difficult to control their emotions.

The person with dementia may also struggle to understand the emotions of those around them. Understanding and recognising the impact of these symptoms may help you to understand the reasons the person is showing distress and help you to give the best type of support.

Family members are equally likely to have difficulty in accepting the diagnosis and the changes
dementia can cause to the person and the relationship they have with them. It’s important to
ensure everybody takes the time to understand how one another is feeling.

There is evidence that people living with dementia can remain healthy, with a good sense of wellbeing, by being active and socially engaged. People who focus on their strengths, and the things they like and want to do, are able to cope better with the changes that dementia can bring and can continue enjoying their life.

Caring for someone with Dementia

Caring for someone with Dementia can be daunting, challenging, and exhausting. You may be caring for a parent, a partner, an elderly relative, or a friend with dementia, whoever it is, it’s important to educate yourself about the condition but also ensure you also care for yourself. Here are some things to consider.

Accept support – this support may come from other members of your family, a professional or a support group. Just don’t be afraid to accept or ask for help. This help will allow you to take a break and have some time to yourself. It may also lead to you making new friends who understand what you are going through. You may learn more about the condition and how other carers deal with the challenges it brings.

Be empathetic - as a carer compassion and empathy are at the heart of what you are doing. Be patient and understanding, don’t criticize and judge. Listen and be interested in what they are telling you, even if they have told you many times before.

Look after their overall wellbeing – make sure the person with dementia regularly has their physical health monitored and ensure they receive the appropriate health advice or treatment. It’s important they remain active, this could include walking, gardening, or dancing. A balanced diet is also essential, including drinking plenty of fluids (ideally water) and reducing the amount of caffeine and alcohol they drink. If they smoke, help, and encourage them to stop. Smoking can increase the risk of physical and cognitive conditions. Getting enough sleep is also vital as poor sleep can affect concentration and cognitive function. Where you can, try and adapt the person’s home to make it as safe and comfortable for them as possible.

Dementia Specific Support - seek out advice, support, education, and training. This could involve investigating local services, joining a social or peer support group. Which can be attended in person or online. It can be helpful to know other people who have similar experiences and who may have some good advice and support to offer. Identify dementia friendly places to visit and understand how to make travel more dementia friendly. There are several dementia charities and organisations who have great websites providing information, support, tips, and activities. Details can be found at the end of this guide.

Be positive – focus on their strengths and think about what they can still do, rather than what they can’t. Prioritise things that bring them peace and joy, such as listening to music, dancing, or walking in the garden. Try to avoid negative comments and correcting the person if they get something wrong or muddled up. Take a day at a time, rather than looking too much in the future. Focus on what is achievable now.

Be realistic – those with dementia will have good and bad days. Be realistic about the course of the
disease, remember that most types of dementia are irreversible and progressive. Dementia will tend to get worse over time and there is no known cure.

It’s more than memory loss – memory loss is typically the main dementia symptom. But the symptoms experienced will depend on the area of the brain that is most affected. The person with dementia will experience a neurological decline that may lead to other issues. This may be linked to their behaviour and mood. Towards the later stages of most types of dementia, patients will struggle with everyday living activities, such as dressing and washing independently. They may also become non-communicative, unable to recognise loved ones and even unable to move about. If they are having trouble remembering where they keep things, you could try keeping important items in one, consistent place. Using a whiteboard or similar showing reminders for the person.

Plan ahead – when caring for someone with dementia things will change, so you should prepare for a time when their loved one may need more care than you can provide, this may be provided from a professional coming into your home each day or with your loved one moving into a residential setting. You will need to prepare yourself for this emotionally and plan financially for this change. You will also need to ensure you have time to find a care home you are happy with. Develop coping strategies to live as well as possible with the diagnosis. Have a family discussion about future plans, including applying for a Lasting Power of Attorney and making an Advance Care Plan. Understand what financial support is available, including attendance allowance and council tax relief.

Self care – As a carer its essential to look after your own wellbeing. Caring can be both physically and mentally exhausting, you may be getting up several times in the night, you may have to lift an adult who is heavier than you, or you may be juggling caring whilst also holding down a job. You may also have the emotional distress of feeling like you are ‘losing’ your loved one. Caring for others can be very stressful and may lead to a mental health illness, such as depression. This is why caring for yourself is vital when you are caring for somebody else. So, ensure you eat and sleep well, do some exercise and take some time for yourself to do the things you enjoy. Remember, you can’t pour from an empty cup.

Support & Sources of Information

Dementia UK

Alzheimer’s Society

Alzheimer’s research UK

Age UK

Carers UK

Citizen Advice

NHS

Mind