Sometimes words can be a little confusing
Here we break down a few terms you may find across this site or used in consultations. If you have any suggestions to add to the list we would love to hear from you [email protected]
Admiral Nurses are trained mental health nurses who can offer specialist help, support and advice for people living with dementia and their carers. Admiral nurses are available via telephone support or there may be face to face services in your area. Admiral Nurses are provided by Dementia UK, sometimes in partnership with other organisations such as the NHS.
Advance Care Plan (ACP)
An advance care plan (ACP) is a document you can use to specify a person’s preferences for future health care or medical interventions. Advance care plans come into effect when a person is unable to communicate their preferences or make decisions e.g. becomes seriously ill, injured or their dementia had progressed.
Advance Decisions to Refuse Treatment (ADRT)
Sometimes called a ‘living will’. This is a decision you can make now to refuse specific treatments in the future. It lets healthcare professionals know your wishes if you are not able to communicate them. All treatments you are refusing must be named. ADRT is legally binding if it meets the legal requirements of the Mental Capacity Act 2005.
This is written statement which includes your preferences, wishes, beliefs and values about the care you want in the future. This might be instructions for how you would like to be cared for (such as your daily care, religious practices) or where you would like to be cared for (such as at home, in a hospice). An advance statement can be legally binding.
Age UK is a leading UK charity with the aim of supporting all older people. They provide information, a free national advice helpline, advice, and local services.
The Alzheimer’s Society is a leading dementia charity in the UK. They provide support for people living with dementia and carers through their website and Dementia Connect. They have a free national helpline, an online forum, and a wealth of information about many aspects of dementia and support. In some areas of the UK, they provide direct one to one support and dementia support groups through Dementia Advisers.
Adults with Incapacity (Scotland) Act 2000
Adults with Incapacity (Scotland) Act 2000 is the legal framework for safeguarding the welfare, finances and property of adults who lack capacity to make some or all decisions for themselves. It is underpinned by five key principles. These must be applied when decisions are being made on behalf of the person or the Act is being applied.
Anxiety is a feeling of tension and stress, often along with worried thoughts. Anxious feelings may cause physical changes like increased heart rate or blood pressure. Anxiety is normal in stressful situations, such as when having your memory tested or visiting a doctor. When anxiety persists or is very strong and interferes with daily life, you should talk to a doctor or psychologist, as there are treatments that can help.
Assistive technology describes a wide range of objects or software which may assist in making everyday tasks easier or safer. Examples may be bathroom handrails or ramps, or smart phone apps and electronic falls detectors.
Care Needs Assessment
Care Needs Assessments are carried out through your local authority (council). Assessments are carried out telephone or face to face assessment, to work out what help you can receive from the local authority. This support may be to help with your daily activities or your living environment.
A care plan is a written document which captures decisions made between the health care team, the individual, carers and family members. The care plan may include details of the clinical diagnosis, personal preferences, care goals, treatment and management, and risk assessments.
A paid worker who supports a person at home or in residential care. They might help with a variety of tasks including showers and personal care, housework, shopping, and social activities.
A carer (might also be referred to as a family carer, care partner, or supporter) is any person who supports a person who might need help. The primary carer is the main supporter. Support may be practical (for example, transport, cooking, making appointments) and emotional. Carers are usually family members or friends and are not paid.
Carer’s Assessments are carried out through your local authority (council). Assessments are carried out either by telephone or a face to face assessment, to work out what support you can receive as a carer from the local authority. This may be financial help, practical help, or access to equipment.
Carer’s UK are a leading national charity who provide expert advice, information and support for specifically for issues which affect carers. This includes all conditions and ages. Carer’s UK have an online forum, a national helpline and a range of fact sheets providing practical information.
Chronic diseases (also known as Long Term Conditions) affect people long-term and can greatly impact on quality of life. Examples include dementia, arthritis, mental health conditions, cancer diabetes, chronic pulmonary obstructive disease (COPD), Asthma and back pain.
Cognition describes how the brain works. This includes: understanding information, memory, the senses (sight, hearing, touch, smell, or taste) and being able to use this information appropriately. It also involves brain function which helps us to get things done (executive function), such as solving problems, attention, social awareness, and decision making. Dementia can affect cognition in many ways.
Therapies which improve cognitive function by relearning skills, such as reasoning, perception and thought.
Cognitive stimulation therapy
A programme of structured activities, often within a small group, over several sessions led by a trained nurse, an occupational therapist, or a carer. Sessions are designed to improve mental abilities including attention, memory, and language.
Experiencing two or more diseases or medical conditions at the same time is called comorbidity. This may impact on treatment and health planning.
Community Mental Health Team
A team of healthcare specialists including: psychiatrists, psychologists, community psychiatric nurses, social workers, and occupational therapists, who work together to offer mental health support for people with dementia and other conditions.
Dementia is a group of conditions that may be caused by a range of diseases that affect the brain. This may result in changes to brain function, thinking, behaviour, and the ability to carry out everyday tasks. It may be described as progressing over a range of stages: early/mild, moderate, and severe/advanced. The most common type of dementia is Alzheimer’s disease. Other common types include vascular dementia, frontotemporal dementia, or dementia associated with Parkinson’s disease.
Dementia UK are a leading dementia charity who support people living with dementia and their carers. They provide Admiral Nurse Services (in some areas), a telephone hotline, a website and virtual clinics.
Dementia Advisers are trained, non-medical professionals provide support face to face and over the telephone. They can help people living with dementia and their carers support around all aspects of living with dementia from diagnosis to end of life care. Contact the Alzheimer’s Society to talk to a dementia adviser.
Dementia Navigators can help you connect care and support in the community by signposting you to services and information. They can also provide direct non-medical support through regular telephone or face to face contact. Dementia Navigators are provided by the NHS and the Alzheimer’s Society. However, dementia navigators may not be available in all areas of the UK.
Depression is a constant feeling of sadness and loss of interest, which may stop someone doing their normal daily activities. It may affect their eating, personal care, change their behaviour, or lead to the person withdrawing from those around them. Symptoms can range from mild to severe. It may not be easily recognised in someone with dementia if their behaviour has changed as their condition develops. Carers are also at risk of depression.
Dieticians provide advice on eating and nutrition and the impact this may have on overall health. Your GP can refer you to nutrition and dietics services.
Disability refers to impairment caused by a broad range of health conditions. The impairment may have developed over time, occurred due to an accident or trauma or may have been present from birth. Under the Equality Act 2010 you are classed as having a disability if you have a physical and/or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities. Dementia is classed as a disability. This may help protect your rights and access to financial support and services.
The Driver and Vehicle Licensing Agency (DVLA) is a government agency which regulates driving in the UK. A dementia diagnosis must be reported to the DVLA if the person wishes to continue driving. The DVLA will then make an assessment of the person’s suitability to drive.
Our emotional resilience describes how we respond to challenging and stressful situations and events. These might be big life changes or everyday challenges. Building emotional resilience can help you to adapt to stressful situations, and cope better with life’s ups and downs. Emotional resilience can change over time. Having good support is key to emotional resilience.
A way of supporting individuals to carry on completing everyday living tasks when this may be challenging.
Our world around us which influences our lives and quality of life. This may be where we live, work, our social environment (our relationships and connections with others, cultural and spiritual values) and economic and political situations. All these combined can impact our choices and quality of life.
Functional ability is a medical way of describing a person’s ability to carry out everyday tasks and activities.
A doctor who specialises in diagnosing and providing medical treatment and care of older people, usually 65 years and above.
General Practitioner (GP)
GP or doctor is the healthcare professional based in your local surgery, practice, or health centre. They are part of the primary care team. They are likely to be the first person you visit if you are concerned about your health. They can assess your health, do tests, refer you to specialist services, prescribe medications, give you advice and offer other healthcare support.
Independent Mental Capacity Advocate (IMCA) is a professional person who can help to protect the rights of a person who lacks mental capacity to make important decisions about their health, wellbeing, and finances. An IMCA can become involved in decisions if the person does not have a relative or friend who can act on their behalf.
Lasting Power of Attorney (LPA).
A lasting power of attorney is a legal document that lets you appoint one or more people to help you make decisions or to make decisions on your behalf if you no longer have mental capacity to make important, specific decisions. There are two types of Lasting Power of Attorney available: health and welfare, and property and financial affairs with separate costs for each. This is Power of Attorney in Scotland and Enduring Power of Attorney in Northern Ireland. Documents are available via government websites.
Your local authority is the local government or ‘council’ responsible for the area you live in. They control access to funds and resources for social care. They conduct assessments for Care Needs Assessments and Carer’s assessments.
Legal definition and test of someone’s ability to make a decision. A healthcare professional might assess decision-making using a test which is set out in the Mental Capacity Act (2005).
Mental Capacity Act (2005)
Law to protect people with impairment of brain or mind and make sure they are included in important decisions about their life. Applicable in England and Wales only. (See AWI for Scotland and Mental Capacity Act 2016 NI for Northern Ireland).
Mental Capacity Act (NI) 2016
Law to protect people with impairment of brain or mind and make sure they are included in important decisions about their life. Applicable in Northern Ireland only.
National Health Service (NHS)
The National Health Service (NHS) is publicly funded and provided by the government. It provides medical and health care services for everyone living in the UK. Most services are ‘free at the point of delivery’ meaning you do not have to pay for a GP visit, tests, or a stay in hospital. Payment is made through public taxes. Some services are only part funded and unless you have an exemption you may have to pay for part of the cost of treatment. Examples include prescriptions, dentist, and opticians.
Neurology is a specialist medical service which focuses on the diagnosis and treatment of disease of the brain and nervous system. Your GP may refer you to neurology services.
Occupational therapy is a specialist service which can support you to improve your ability to do everyday tasks. For example, looking after yourself, your home, getting out and about, and communicating with others. Your GP may refer you to an occupational therapist if you need support with everyday tasks or equipment, or home adaptations.
Old Age Psychiatry
Old Age Psychiatry services specialise in the prevention, diagnosis, and treatment of mental, emotional, and behavioural issues in older people, usually over 65 years of age. Your GP may refer you to an Old Age Psychiatry services.
Perception is a brain function which enables us to recognise something through our senses (such as sight, hearing, taste, smell, and touch. It may also describe an individual’s view of a situation, object, or a situation.
Physiotherapy is a service which specialises in movement, exercise, and manual therapy, education with people affected by injury, illness, or disability. Physiotherapists aim to maintain health for people of all ages, helping patients to manage pain and prevent disease. Your GP may refer you to physiotherapy services.
A practice nurse works in primary care (usually a General Practitioner’s surgery) and provides education, advice, and support for a range of health issues, including dementia. They perform clinical procedures within their scope of practice. They are part of the primary care team.
Healthcare which is based in the community, not in a hospital setting. Such as GP practice, dentist, pharmacy, and optician.
Psychology is a service which specialises in assessments, support, and interventions to manage mental health needs for people with dementia, carers, and other conditions. They can help with issues such as mood and challenging behaviours.
Describes services which support people with their independence through helping the person to regain or maintain skills to carry out everyday tasks. Reablement services may be put in place after a period of illness or hospital admission.
Rehabilitation is a process of supporting people to regain their health. Rehabilitation services may be put in place following a hospital admission or in cases of injury, illness, or surgery.
Group sessions or individual activities which focuses on encouraging the person to think and talk about their past. Photos, books, films, or topics of interest can be helpful prompts.
Social care services can provide help with day-to-day living because of illness or disability. Social care services are provided by the local authority, charities and voluntary organisations, and private companies. They also provide support for carers.
Referral to local, non-medical services to support your wellbeing by a primary care health care professional such as a GP or practice nurse. Examples of services might include a local walking group or a befriending service.
Speech and Language Therapy (SALT)
Speech and language therapy services offer support with conditions which affect speech, language, and swallowing abilities. Your GP may also refer you to a SALT team for support with communication.
Stereotypes fixed ideas of a particular person or thing, which is applied to all in that group, which may not be founded on evidence or fact.
This concerns your general health and includes your physical, mental, emotional, spiritual, social, and occupational (sense of purpose) health
This is a written document which states what will happen to a person’s assets (money, property, valuables) after they die. Your will must be formally witnessed and signed to make it legally valid.
Young Onset dementia
This refers to a diagnosis of dementia received before the age of 65 years.
What is this dementia toolkit?
The toolkit is here for you to start your way forward with dementia. It allows you to save articles and practical tips in the form of to-do’s that are relevant to you in your personal toolkit.
Your to-do list helps keep track of actions you want to take to manage living with dementia. You can save, view and edit your personal toolkit, at anytime and share it with someone else.
If you want more information on how to use your toolkit as you build one, please view our ‘How to use your toolkit guide’ on the toolkit home page.