Dementia

Dementia is an umbrella term given to a number of conditions that affect the brain causing a progressive decline in memory and other brain functions.  While memory loss is the most well known symptom of dementias there are others too, such as difficulty with speaking and thinking clearly, and problems with completing normal everyday tasks.  Dementia can impact on thinking speed, understanding, mood and behaviour. Everyone’s experience of dementia is unique.    

Dementia is not just part of getting older - it is caused by conditions which damage the brain. Because there are a number of different conditions that can cause dementia, doctors will often do tests (such as blood tests or brain scans) to try and find out the underlying cause. You can read more about this in the 'Types of Dementia' section below.

Dementia is thought to affect around 90,000 people in Scotland.  The majority of people affected are over the age of 65 and the likelihood of experiencing dementia increases with age.  Those who develop dementia that are under 65 are considered to have young onset dementia.   

Dementia is a progressive condition meaning that it gets worse over time but there are ways to help with symptoms. There are also services and supports which can enable people experiencing dementia to live a life they enjoy as independently as possible.

There are many different types of dementia and it is possible to have more than one type at the same time. These are referred to as a mixed dementia. Here’s what you need to know about some of the most common forms of dementia, including Alzheimer’s disease, vascular dementia, frontotemporal dementia and Dementia with Lewy Bodies 

Alzheimer’s disease 

Alzheimer’s disease is the most common type of dementia. The exact cause of it is not fully understood, but it seems to be caused by abnormal proteins building up in the brain cells and the spaces between brain cells. This can damage the cells and stop them from working properly.  It causes problems with memory, thinking and behaviour. As a progressive condition, it will gradually affect more and more aspects of a person’s life over time. 

Vascular dementia 

Vascular dementia is the second most common type of dementia. It is caused by damage to the blood supply of the brain. Conditions such as high blood pressure, raised cholesterol, heart disease and diabetes increase the risk of this damage occurring. Vascular dementia can develop gradually, or it can sometimes develop more suddenly, for example, after a stroke. As well as affecting a person's memory, it can sometimes also affect their personality, mood, sleep pattern and mobility. Vascular dementia progresses in a "stair-step" fashion, with sudden, noticeable declines in cognitive (thinking, reasoning, remembering) function, separated by periods of relative stability.

Frontotemporal dementia 

Frontotemporal dementia (FTD) is an umbrella term for a group of dementias that mainly affect the frontal and temporal lobes of the brain, which are responsible for personality, behaviour, language and speech. Unlike other types of dementia, memory loss and concentration problems are less common in the early stages.  A person with frontotemporal dementia might have a range of symptoms, including changes in behaviour, cognitive difficulties and communication challenges. 

Dementia with Lewy Bodies 

Dementia with Lewy bodies (DLB) is caused by small, round, deposits of protein (called 'Lewy bodies') that build up inside brain cells near the centre of the brain. These proteins prevent the brain from working properly and affects the function of cells which control thinking and movement.  Although DLB is common, it can be difficult to diagnose as a form of dementia, because the symptoms don’t always begin with memory problems. Sometimes people with DLB will experience hallucinations (seeing things that aren't there) or may have agitation or confusion which is worse in the evening than during the day.

These are the commonest causes of dementia, but dementia can also be caused by other conditions such as alcohol excess, head injury, Parkinson's disease, Multiple Sclerosis, and Down's syndrome.

Further information can be found on the Alzheimer Scotland website at Types of dementia. 

The content in this section is provided with kind permission from the Alzheimer Scotland - Home website.  

Symptoms of dementia will depend on the area of the brain that is affected and different types of dementia will affect people in specific ways, particularly in the early stages. As a result, everyone experiences dementia differently. 

Early symptoms of dementia can include memory loss and deterioration of other thinking abilities. This is sometimes referred to as Mild Cognitive Impairment (MCI). Examples of this include problems with: 

• memory loss 

• reduced mental acuity (sharpness or clarity of thinking)

• difficulties with language 

• difficulties understanding others 

• changes in mood 

This can result in difficulties doing daily activities such as: 

• misplacing possessions like keys, a purse or wallet 

• difficulty remembering words or people’s names 

• forgetting to plan or prepare meals 

• difficulty remembering appointments 

• getting lost or confused outside 

For more information on MCI please see the Alzheimer's Society website.

If you are newly diagnosed with dementia you are entitled to receive a minimum of one year post-diagnostic support (PDS), provided by Alzheimer Scotland. Across NHS Greater Glasgow & Clyde (NHSGGC) it is usually the Older People's Mental Health Team (OPCMHTs) who offer a comprehensive memory assessment and give a dementia diagnosis.  If you are diagnosed with dementia by an OPCMHT you will be referred to Alzheimer Scotland, who will contact you to start offering support. This support usually includes access to a five-week course aimed at people diagnosed with dementia and their friends and family.  

This is designed to:   

• Help you understand your illness and how to manage your symptoms  

• Keep you connected to your local community and make new connections  

• Give you the opportunity to meet other people with dementia and their families  

• Help you plan for your future  

• Help you plan for future support  

For more information about the post-diagnostic support service, or to find out where your local Alzheimer Scotland Brain Health & Dementia Resource Centre is, visit Alzheimer Scotland. 

Managing underlying health conditions is crucial for dementia care, as factors such as infections or changes in medication can trigger sudden confusion or worsen cognitive decline. It is important, therefore, if you have any other medical problems that you attend regular check-ups. You can get more information about any other conditions you have on the  NHS Inform website.

Here is more information to help you stay well living with dementia:  

Alzheimer Scotland -  Healthy Living with Dementia 

Dementia UK -  Staying healthy  

A dementia diagnosis can be life-altering and trigger a range of emotions, therefore prioritising your mental health is really important in order to preserve your quality of life, independence, and well-being. Focus on maintaining an active social life, engaging in stimulating and pleasurable hobbies, and using your support networks.

• Connect – connect with the people around you: your family, friends, colleagues, and neighbours. Spend time developing these relationships.  Sometimes a good chat is the best way to connect with others, you may find telephone support lines like Silverline Scotland (tel.  0800 4 70 80 90) helpful.  There may also be community supports that are available.  Ask your GP about local Community Connectors who are able to find and link you in with groups or services that interest you.  Your local Alzheimer Scotland Dementia Advisor can connect individuals with local resources (Mon – Fri 9-5 tel. 0300 373 5774)
• The Mental Health Foundation has produced a guide:  Our best mental health tips - backed by research | which you can download for free. This contains 11 practical areas that you can take action on. 
• For other ideas about how to look after your mental health, follow the link: Living with dementia - Alzheimer Scotland

People living with dementia can remain healthy, with a good sense of well-being, by being active and socially engaged. Focusing on things that you can do, things you like and want to do will help you cope better with the changes that dementia can bring. You can still continue to enjoy your life. Here are some things you can do:  

Eating and Drinking  

Eating and drinking well can help your body to fight infection and illness and boosts your overall wellbeing. It will help you to maintain healthy muscles and bones, help you to stay mobile and can help you to reduce your risk of falls and fractures.  

It is important that you drink plenty of fluids to keep your body hydrated. There is a risk of feeling confused as a result of dehydration. Try to drink plenty of water and other fluids in addition to any tea and coffee you drink.  

There is healthy eating information on the NHS Inform website: Food and nutrition

There is also more information you can read about dementia and eating and drinking  

Alzheimer Scotland -  Health Living with Dementia

Dementia UK -  Staying Healthy   

Smoking   

Smoking can increase the risk of dementia progressing more quickly. If you are ready to do so, think about trying to stop smoking. There is lots of support from the NHS Quit Your Way Service available locally. They can also talk to you about electronic cigarettes or vaping.  

Here is information about the free support available in NHSGGC - Stop Smoking Support - Quit your way 

Telephone the service on  0800 916 8858  

There is a Scottish Helpline for those who want more information about stopping smoking, call  0800 848484  

Alcohol   

If you have dementia, your overall ability to tolerate alcohol may be reduced. You might be prone to becoming drunk with smaller amounts of alcohol. It would be advisable to cut down how much and how often you drink alcohol as it can make dementia symptoms worsen. Too much alcohol can cause confusion and increase your risk of falls.  

If you have a type of dementia related to alcohol use it is very important not to drink alcohol because it may make your symptoms worse. Check with your doctor whether it is OK to drink alcohol. 

If you regularly drink alcohol, it's important to seek advice from your doctor or other health care professional if you are thinking about stopping.

Here is more information about safe drinking, knowing what your limits are and knowing where to get support.  Alcohol | NHS inform

 There is also more information about dementia and alcohol  

Alzheimer Scotland -  Healthy Living with Dementia   

Dementia UK -  Alcohol and dementia

Physical activity   

Keeping physically active is important for everyone. Physical activity is important for maintaining fitness and keeping muscles and joints flexible. There are also benefits for your mental health and it can help you get a better night’s sleep.  

Physical activity includes all forms of activity where you move your body. It includes exercise or sport such as cycling or running, but it also includes things like walking, dance, gardening and even housework. Whatever your starting point, doing a bit more activity will help you feel good.  

There is healthy living information on the Keeping active | NHS inform website   

There is also more information about dementia and physical activity at the following links 

Alzheimer Scotland -  Healthy Living with Dementia   

Dementia UK -  Staying Healthy   

Allied Health Professionals, such as Occupational Therapists or Physiotherapists can help you be more active. For more information please see  Allied Health Professionals. 

Sleep 

A person with dementia experiences physical changes in their brain because of their condition. These changes can affect how much, and how well they sleep.

A person with dementia may have problems with sleeping at night, and may sleep more during the day. They may find it difficult to get to sleep or they may wake up in the night. The person you care for may not feel rested when they wake up.

Follow these links for more information and help:  

• How does dementia affect sleep? | Alzheimer's Society
• NHS Inform self-help tips for sleeping well 
• MyApp: My Mental Health - Sleep Problems
• Sleepio is a six-week clinically proven programme used to treat insomnia, available free on the NHS.

Support for carers 

In 2016 new legislation was passed - the  Carers (Scotland) Act 2016. It aims to ensure that carers know their rights and how to get the help and support they are entitled to. This will mean that carers are supported to continue to care, for as long as they choose, in better health and to have a life alongside caring. There are dedicated services to support you in your caring role. These services understand how rewarding and how difficult being a carer can be.   

Further information 

•  Alzheimer Scotland support for carers   

•  Age Scotland advice for carers   

•  Carers Trust: our work in Scotland   

• Carer centres | Care Information Scotland

Dementia Safeguarding

Herbert Protocol 

The Herbert Protocol is an information gathering tool that helps police and other agencies quickly and safely locate missing people who have dementia and to return them home.   

You or your family can download the Herbert Protocol Form and provide information such as a photograph, places of importance to you, places you often visit, health issues and other information that may help if you are reported missing.  The form is kept within your home and would only be used if needed. For more information  The Herbert Protocol - Missing Persons with Dementia - Police Scotland  

ADAM

ADAM is a website created by Alzheimer Scotland, which helps you find the right pieces of technology at the right time – including devices and products that promote independent and safe living both at home and out and about in the community.

All of us want to be in control of our lives and to make decisions about our future. Planning for the future after a diagnosis of dementia will help you take control of decisions about things that are important to you like your care needs and financial and legal affairs. Planning ahead and making sure that those close to you know what you want is an important part of making sure that your wishes are respected. This section offers suggestions and links that may be useful as you think about planning for the future. 

Legal Matters 

A Power of Attorney is a legal document that is used to ensure your personal welfare and financial affairs can still be dealt with and protected when you are unable to act on your own behalf.  You can make the decisions about who you want to act on your behalf and what powers you want them to have. It will help you to decide who will take decisions on your behalf if required, and to express your particular wishes about what you would like to happen.  

Age Scotland has an easy read guidance leaflet:  A guide to power of attorney in Scotland 

You can telephone the Office of the Public Guardian on  01324 678 300 or go to  Office of the Public Guardian   

Anticipatory Care Plan 

Anticipatory Care Planning (ACP) is where you talk about what matters most when making plans for your care in the future. You can talk about this with those close to you, during post-diagnostic support or during your contact with other health or social care professionals. You will be given the opportunity to create your own Anticipatory Care Plan and will be encouraged to share details about what matters to you and what is important for your future care. You will also be asked to think about what helps you to stay well and your preferences for support or care if you need it. More information about anticipatory care planning can be found at  NHS Inform.

Dementia Safeguarding

Herbert Protocol 

The Herbert Protocol is an information gathering tool that helps police and other agencies quickly and safely locate missing people who have dementia and to return them home.   

You or your family can download the Herbert Protocol Form and provide information such as a photograph, places of importance to you, places you often visit, health issues and other information that may help if you are reported missing.  The form is kept within your home and would only be used if needed. For more information  The Herbert Protocol - Missing Persons with Dementia - Police Scotland  

ADAM

ADAM is a website created by Alzheimer Scotland, which helps you find the right pieces of technology at the right time – including devices and products that promote independent and safe living both at home and out and about in the community.

Memory 

What dementia looks like as it progresses depends on the type of dementia as well as the individual characteristics of the person experiencing it.  Everyone’s experience of dementia is unique.  There are things you can do which may slow down or help you manage the memory loss that is part of dementia. 

Alzheimer's Society has some helpful suggestions here: 

•  Memory Loss Support Tips   
• Memory aids and tools | Alzheimer's Society

 Difficulty finding words 

Dementia can affect the parts of the brain that control language.  This can mean that an individual with dementia may have difficulty finding the right words to use or get words in the wrong order or not be able to think of a word at all.  The type of dementia a person has influences how and when language is affected.  More information can be found here:  Dementia and the Brain.  

Making sure your family, carers and health and social care staff know about your likes, dislikes and routines, can help support communication. 

Staying Independent - Aids and Adaptations 

An Allied Health Professional can support you to adapt your home to make daily life easier for you and your family or carer. Using different types of equipment and improving the design and layout of the home can help. Equipment doesn’t have to cost a lot or be complicated to be helpful. Even small, everyday items can help. Examples are:  

• Equipment to help you with walking and moving  

• Equipment to help with household tasks  

• Adapted kitchen equipment  

• Equipment to help with washing, bathing and using the toilet  

Thinking about equipment or adaptations early is a good idea, this will enable you get used to it as part of your daily routine. If you or your family member and or carer would like to find out what is available, contact your local Community Occupational Therapist. 

Activities to try

• Talk about your feelings. Do activities you enjoy such as listening to music or reading books. 
•  Playlist for life is a resource designed specifically for people experiencing dementia. It helps you to find, store and listen to music that you like and that is personally meaningful to you. 
• Pull out some old photos and reminisce about good times.   
• Suggestions of things that you can do within your home environment can be found at Home Environment - Try — connecting people, connecting support.  
• Spending time in nature or even just going outside can boost wellbeing and help you feel more relaxed. You could visit a favourite park or outdoor space that you are familiar with.  
• Stress and anxiety are a normal part of life and learning some relaxation or breathing techniques can help you to stay calm in difficult situations. Information and guidance on breathing techniques and relaxation can be found at Relaxation - More — connecting people, connecting support.  
• Information about meditation and mindfulness can be found at  Calm Blog | The Essentials: Free mental health tools. 
• Allied health professionals have worked with Alzheimer Scotland to provide information about looking after your physical health and wellbeing. 
• You could also try the NHS inform Healthy living site.
• Board games, puzzles or crosswords help keep your mind active. Hobbies such as writing, painting, crafts or knitting can bring enjoyment and help you to relax. 
• Social connections are important for all of us, try to stay connected with community or faith groups and keep in touch with friends and family. 

Using Technology 

Using technology or telecare services can help you if there is an emergency or if you are having difficulties in your home. What is important is that someone will know when something might be wrong and get help for you. As well as peace of mind for you, your family, and your carers, Telecare may give you more freedom to live independently in your own home and when you are out and about. It could even get you home more quickly if you are admitted to hospital. Here are some examples when Telecare can help:  

• detect risks such as smoke, floods and gas leaks  

• call for help if you fall  

• remind you to take your medication at the correct time  

• notify someone if you leave your home and would have difficulty finding your way back  

• help you stay safe when out and about  

Telecare Self-Check Tool  

There is an online quick self-check test to see if you or someone you know could benefit from telecare. You might find it helpful to complete this first.  

• You’ll be asked between 3 and 6 questions  

• The check should take between 3 and 5 minutes to complete  

• You do not need to give any personal details  

• The Check provides useful advice and will say if you or someone you know should apply for Telecare.  

The Telecare Self-Check Tool is available  here    

You can find out more about Telecare through your local council's website.

About Digital and Me – (ADAM)  

ADAM is a new online platform provided by Alzheimer Scotland to help you to find the right digital products and services to look after your health and wellbeing. You can have an online chat with ADAM, your digital friend, who will ask some questions about the things that are important to you, and things that might be becoming more of a challenge. They will then recommend digital products which you might find useful.  

To find out more and to chat with  ADAM  

Age Scotland 

Website:  Age Scotland: advice for carers 

Alzheimer Scotland 

24 hour helpline:  0800 888 6678 

• ADAM Online (About Digital And Me) 

• Caring for someone with dementia 

Carers (Scotland) Act 2016 

Website:  Carers (Scotland) Act 2016 

Carers Trust 

Website:  Carers Trust: our work in Scotland 

Mental Health Foundation 

Website:  Mindfulness 

Mind UK 

Website:  Relaxation tips 

NHS Inform 

Webpage:  Insomnia section 

Webpage:  Self-help tips for sleeping well 

Office of the Public Guardian 

Telephone:  01324 678 300  

Website:  Office of the Public Guardian   

Playlist for Life 

Website:  Playlist for Life 

Quit Your Way 

Scottish Helpline for those who want more information about stopping smoking, call  0800 848484  

Self-Directed Support Scotland 

Website:  Pocket-sized guide on the Carers (Scotland) Act 2016 

Silverline Scotland 

Telephone:  0800 4 70 80 90 

Together in Dementia Everyday 

Website:  Together in dementia everyday (TIDE)  

Young Dementia Network 

Website:  Young Dementia Network  

• Samaritans Free, confidential support 24 hours a day, 365 days a year. 📞 Call 116 123 (freephone) 📧 Email: jo@samaritans.org 
• Breathing Space (Scotland) A confidential phone line for anyone feeling low, anxious, or depressed. 📞 Call 0800 83 85 87 (free)  Weekdays: Monday-Thursday 6pm to 2am Weekend: Friday 6pm-Monday 6am 
• Give us a shout A free, confidential, 24/7 text messaging service for anyone who is struggling to cope. 💬 Text 85258 (free) 
• Self Harm Network Scotland, who can provide support and resources and a live chat is available from 6pm to 10pm, 7 days a week. The Self Harm Network can also provide one to one support to anyone 12+ in Scotland via phone, video call or text support; complete their Contact Us form and someone will be in touch. A support group for loved ones is also available.