About Dementia
A useful information resource for people living with dementia and their carers
Introduction to dementia
It is estimated that around 9 million people are living with dementia in Europe. Dementia mostly affects older people (aged 65 and older). The most important risk factor for developing dementia is age. However, younger people (i.e. people in their 50’s, 40’s and in some cases even 30’s) can also get dementia. It is estimated that around 5% of people with dementia may be younger than 65
Dementia can be described as a set of symptoms which can be caused by a number of disorders affecting the brain. The most typical symptoms include memory loss, difficulties with thinking, problem-solving, disorientation and problems with language and communication. The symptoms have to be severe enough to affect the person’s daily life (their functioning). The main symptoms of dementia are cognitive (i.e. linked to the functioning of the brain). Dementia has a social, physical and psychological impact on people too. Dementia is also a form of disability. The personality, behaviour and mood of the person can also be affected. However, the reactions and behaviour of people with dementia are sometimes mistakenly attributed to changes in the brain when in effect, the person is responding appropriately to frustration, worry, events or the attitudes and behaviour of other people. Each person is unique and may experience specific symptoms earlier, later or not at all. Symptoms may also differ depending on the type of dementia.
Alzheimer’s disease (AD) is one of the most common conditions leading to dementia. It affects 60-65% of people with dementia. Other common types of dementia include dementia with Lewy bodies, vascular dementia and fronto-temporal dementia.
Dementia is a progressive condition: This means that it gets worse over time. Over the years, scientists have described the progression of dementia in terms of stages or phases. (e.g. 3, 5 or 7 stages depending on the country). One of the most common ways of describing the progression of dementia is as early/mild, moderate and severe/ advanced dementia. It is important to bear in mind that each person may differ in the patterns of changes they experience and speed at which their abilities deteriorate.
Currently, there is a huge amount of research being done across the globe by the scientific community to find better and more efficient treatments for dementia. However, to date, there is no known cure for dementia. A number of drugs are available for Alzheimer’s disease in Europe. These drugs can offer some relief from some of the symptoms of dementia for some time, but do not work for every person. In addition, some non-pharmacological interventions (e.g. cognitive training, physical activities, cognitive rehabilitation, reminiscence, art or music therapy, etc.) can also help to improve memory, functioning, mood and behaviour. Whilst no cure exists, many people live well with dementia and much can be offered to support and improve the lives of people with dementia and their families (please see section on “living well with dementia” and “external support and services”).
About Dementia - NHS
https://www.nhs.uk/conditions/dementia/about/
Five things you should know about dementia
Alzheimer’s Society Videos
Living well with dementia
Some of our friends, colleagues, neighbours, partners and relatives have dementia. Some of us have dementia ourselves. Dementia is a condition a person has. It is just one aspect of their identity to which they may accord varying degrees of importance. Unfortunately, many people fear dementia and it has been considered as a social stigma for many years. Fortunately, attitudes are slowly but surely changing as more and more people speak out in public about having dementia and show others that life goes. Most importantly, they are showing that it is possible to live well with dementia.
People with dementia have the same human rights as every other citizen and this includes the right to full inclusion and participation in all aspects of life. Having dementia, living with or caring for someone who has dementia often means being confronted with new situations, experiences and challenges. Sometimes, this can be difficult. Nevertheless, many people with dementia emphasise that, with appropriate support (please see the next section on external support and services), it is possible to maintain a good quality of life, to continue to be valued and to lead a meaningful life within their community.
Examples of living well with dementia include:
- looking after your psychological and emotional wellbeing (as the person who has dementia but also as a friend, relative or carer of someone who has dementia),
- taking measures to promote independent living (e.g. taking up offers of help, creating a safe living environment, finding coping strategies to counteract difficulties encountered and seeking assistance for financial and administrative matters if and when needed),
- monitoring your health (both in relation to dementia and in general)
- maintaining a healthy lifestyle (e.g. keeping physically active, eating well, keeping your mind active),
- keeping socially active and involve in your community.
Living well with dementia - NHS
https://www.nhs.uk/conditions/dementia/living-well-with-dementia/
Daily living - Alzheimer’s Society
https://www.alzheimers.org.uk/info/20029/daily_living
Staying independent - Alzheimer’s Society
https://www.alzheimers.org.uk/info/20030/staying_independent
Living with dementia- Alzheimer’s Society videos
External support and resources
Some people may find it overwhelming to receive a diagnosis of dementia. In some cases, people feel they are “on their own”. Some may lack the confidence, find it difficult to, or don’t know where to go to ask for help.
There are probably some formal services in your local community that can offer some support to you and/or to your family. You may feel you don’t need any help or support now. However, it may be good to know what is available in your community and to find out what you would need to do if you eventually needed help or care. Almost every person with dementia will need some type of external support or care at some point in their lives.
Various types of support might be available to make your life easier. Sometimes the services are specific for people with dementia. In other cases, you may benefit from services that are for other groups or for the community in general. Some examples of support/care for people with dementia and their carers include:
- Education about dementia and how to manage symptoms of dementia
- Psychological support to help you to address your concerns
- Advocacy or peer support groups for people with dementia and/ or for carers where you can meet other people who are or have experienced similar changes and situations of the ones you are experiencing.
- Various activities to help you remain active and maintain or create social ties: like walking groups, choirs, cultural activities etc.
- Help at home with washing and dressing, meals on wheels, shopping, cooking and cleaning etc.
- Day care centres or other places where you can take part in therapeutic activities that might help with some of the symptoms of dementia
- Equipment or adaptations to make your home safer.
- Respite care and residential care.
There are different health and social professionals who can provide information about the existing care and support in your local community. Examples include social workers, care coordinators, general practitioners and community nurses amongst others. They may also be able to help you to work out what benefits you might be entitled to and arrange access to the support or care you may need. If you are in paid employment, it is important to enquire about possible measures to protect your rights and wellbeing in the workplace.
Non-profit organisations or charities, like the Alzheimer associations, can also be very helpful. Alzheimer associations can provide advice, information, support and sometimes services and care to people with dementia and their families
Social services and care can sometimes be provided by private companies. It could be important to also have information about the private services that are available in your local area.
Help and support for people with dementia - NHS
https://www.nhs.uk/conditions/dementia/help-and-support/
Help with dementia care- Alzheimer’s Society
Advance care planning
Dementia usually progresses quite slowly but most people find that at some point it interferes with their ability to do things they used to take for granted. This is because we use our memory, attention, concentration, orientation and problem-solving abilities to accomplish even the simplest of everyday tasks. Advance care planning involves thinking ahead of time about the types of decisions that might need to be made and taking measures to ensure that the appropriate people know about our wishes and preferences.
Advance care planning should ideally involve other relevant people such as your doctor (who might be able to answer questions you have about future possible care options), your partner, relatives or friends (who might later provide some of the care or support you receive) and most importantly anyone you might want to ask to make decisions on your behalf later (so that they already know that you would like them to do this and also what is important to you).
Advance care planning can cover all kinds of issues linked to health, welfare, wellbeing, property, affairs and daily living for which a decision might need to be made. This might include major issues such as handling finances, appointing a power of attorney or guardian, residential care, the refusal of certain medical care and decisions about end-of-life care, all of which should be considered early on whislt you have the capacity to make such decisions. However, there are probably lots of things, which on the surface might seem less important, which people should know about if they are going to make decisions on your behalf which promote your wellbeing and quality of life. Examples include food preferences, clothes style, hobbies, religious or cultural practices, when you like to get up in the morning and whether you prefer a bath or shower etc.
It is recommended to write down your preferences and wishes in an advance directive (sometimes called a living will). This document comes into effect only if you lose the capacity to make and communicate decisions. It is important to make decisions about living and dying sufficiently early on, whilst you still have the capacity to do so. However, your wishes may change as your situation changes so advance care planning should be seen as an ongoing process. You might want to regularly review and either update or confirm that your advance directive reflects your current wishes.
Apart from issues for which someone else might need to make decisions on your behalf, it might be helpful to think about issues which might have become more relevant now that you know you have dementia and for which you are able to decide for yourself. This might, for example, include issues related to current paid employment, driving, investments in property, moving house, fulfilling plans you might have made, perhaps with your partner, family or friends and so on.
Advance care planning is about expressing your wishes, playing an active role in decisions affecting your life and taking necessary measures to ensure that there are trustworthy people to support you when needed.
Funding
SMART4MD is co-financed by the European Union under an EU Framework Programme for Research and Innovation - Horizon 2020, with grant agreement number 643399.
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