What is the role and responsibilities of a worker when working with dementia?

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1 DEMENTIA Dementia is not actually a condition in itself but is a broad term used to describe the symptoms that occur when the brain is affected by specific diseases and conditions. Dementia is a progressive brain illness that will eventually lead to death. People may die from the complications arising from end-stage dementia. People may die with a mix of problems. Dementia may not be the main cause of death but it interacts with other conditions and can complicate and worsen them. It can affect different individuals in different ways and comes in several forms. What is the role and responsibilities of a worker when working with dementia? It is important that you understand the type of dementia your service user/patient has, and their own individual signs and symptoms. You need to understand their life history and be able to treat them as an individual. The service user/patient must be the focus of your care and you must always put their needs first, even if this takes longer to care for them. What are the legal requirements of a worker when working with dementia? Some Individuals may lose the ability to make decisions and give their consent. It is imperative that you understand the Mental Capacity Act. They may have an allocated family member, friend, lawyer or someone else who has Power of Attorney a legal right to make decisions based on their best interests. Mental Capacity Act 2005 You have mental capacity if you are able to make a decision yourself. This can be by communicating verbally, with sign language or even simple movements like squeezing a hand or blinking an eye. You will be able to understand the information, retain it as long as needed to make the decision and weigh up the information. Individuals who cannot do the above would be said to lack capacity. There are many reasons an individual would lack capacity e.g. illness, injury, mental health problems or a learning disability. Individuals will be assessed on the capacity and a written assessment will be completed. The assessment will detail if there are times of the day that the individual may be able to think more clearly. The Mental Capacity Act 2005 applies to people aged 16 and over in England and Wales. It protects people with mental health problems, learning disabilities and dementia who do not have the ability to make decisions for themselves. It can also be used as a guide for those who are making the decisions to ensure they are working in the individual s best interest. Northern Ireland has different laws around capacity. The Alzheimer s Society have a factsheet N1472, Enduring Power of Attorney and Controllership that details these laws. The Act covers everyday decisions such as personal care, what to eat, drink or wear as well as financial affairs and health and social care needs. The Deprivation of Liberty Safeguards The Deprivation of Liberty Safeguards (DoLS) came into force in England and Wales in April 2009 under amendments to the Mental Capacity Act They were introduced following a decision in the European Court of Human Rights (ECHR). The ECHR found that our law did not give adequate 1

2 protection to people who lacked mental capacity to consent to care or treatment, and who needed limits put on their liberty to keep them safe. Article 5 of the Human Rights Act 1998 requires that no one should be deprived of their liberty except in certain, pre-defined, circumstances; there must also be an appropriate, legally based, procedure in place to protect the individual s rights. What are the main aims of a worker when working with dementia? To promote dignity and independence, understand the type of dementia the service user/patient has and how to assist the service user/patient to have a fulfilled life, understanding of their needs, wants, hopes and fears. What is Dementia? Dementia is a progressive illness of the brain and comes in several different forms. Where the disease is in the brain and the type determines the symptoms the Individual will have. The disease often starts slowly; making small changes to the individual, but are severe enough to affect everyday life. They may be affected by mood changes or changes in their behavior. Brain cells die and cannot be replaced, this is caused by damage to the brain either from the dementia or a series of strokes. Types of Dementia Alzheimer s disease Abnormal protein covers the brain cells and damages the internal structure and chemical connections between the brain and cells are lost causing the cells to die. This will result in memory loss, difficulty choosing the right words, making decisions and solving problems. Type 3 diabetes is a title that has been proposed for Alzheimer s disease which results from resistance to insulin in the brain. Vascular dementia Some of the brain cells become damaged or die as a result of blood vessels narrowing or blocking. This could be brought on by a series of small strokes, a large stroke or damage to the brains small blood vessels. Individuals may have short periods of confusion. This can also cause symptoms similar to Alzheimer s such as difficulty choosing the right words, making decisions and solving problems. Dementia with Lewy bodies Lewy bodies, which are tiny abnormal structures, disrupt the brains chemistry, killing the brain cells. Short term memory is not normally affected as much as in Alzheimer s. One of the symptoms is difficulty with movement, which is similar to Parkinson s. Other symptoms include difficulty judging distances, fluctuating alertness and hallucinations. Frontotemporal dementia (including Pick s disease) Clumps of abnormal proteins form inside and kill the nerve cells in the front and side parts of the brain. Initial symptoms could include difficulty with speech including recognising and understanding words, changes to personality and behaviour, all dependent on the area of the brain affected. Mixed dementia Although it is common to be diagnosed with one type of dementia, it is possible to have more than one. This is called mixed dementia. Although at the beginning each type of dementia has its own signs and symptoms as the illness progresses they become more similar, due to more of the brain being affected. Remember each person is an individual and so is the progression and the symptoms of their illness. Many people remain independent for years. Dementia, with the proper care and advice can be managed well. 2

3 Rarer Causes of Dementia Rarer causes of dementia are alcohol related brain damage (including Korsakoff s syndrome), HIV and Creutzfeldt-Jakob disease (CJD). Individuals with Down s Syndrome are at risk of Alzheimer s diseases as they reach middle age. Also some individuals with Huntingdon s or Parkinson s may also develop dementia as their illness progresses. Promoting independence Always work in a way that you are promoting independence. Do not take over the tasks, instead assist the service user/patient to do it themselves. Encouragement and praise are useful tools and if the service user/patient feels empowered they are more likely to be happy, making them easier to care for. Listen to what they want, like and need. Find out from family, friends and colleagues what they are capable of doing. For example when assisting with personal care always offer them the flannel to wash themselves, verbally encourage them to wash the parts they have missed. Offer to help with parts they cannot reach, give them control. Don t forget that an activity is anything and everything we do from waking up to going to bed and the smallest thing can be turned into a positive interaction or chance to keep busy. You might want to start some days by leaving an area of the home or care home in a half done approach, for example by leaving: A basket of washing to be folded/socks to pair. A rake and broom in garden ready to sweep leaves. A sink with warm soapy water and some cups and saucers. Some cutlery and placemats by tables ready to be set. A basket of unfinished knitting around. Some magazines left open on colourful pictures. Reporting & Recording Always record and report any concerns to your line manager. There are many reasons why carers may find it necessary to refer to other agencies when supporting individuals with dementia, including: being unable to meet the needs of the person with dementia if the individual s condition deteriorates daily tasks become harder to achieve the carer s physical and mental health is at risk risks associated with safety risk of abuse to the individual with dementia when the carer needs a break when the carer feels they need to preserve their own social life Memory It is important that you get to know the individual, find out as much as you can from them, their family, friends etc. Memory books or scrap books are good ways of working with dementia as you can use them to remember the past. Talk to them about what they did. What was their mum like? Where did they live? Where did they work? How many children did they have? The more you know about the person the more you can talk to them and build a trusting relationship. 3

4 Walking with purpose Service user/patients with dementia often walk around. They often do this as they want to get somewhere, to pick up the children, visit their mother, get back home etc. Sometimes it is a sign of anxiety, boredom or as a result of their memory loss. If a service user/patient is walking around let the person in charge know, follow them, then slowly approach and ask them how they are. Have a conversation so they are relaxed and at ease with you. Another member of staff can then approach and join in the conversation, then offer to go back and have a cup of tea or coffee. This may need to be attempted several times, be patient and relaxed. Do not constantly ask the person to sit down and dismiss their attempts to communicate with you as their actions are a form of communication. In the long term, try enabling people to make choices and decisions whenever possible to reduce feelings of anxiety. Continence Service user/patients may not remember how to tell you they need the toilet or may not be able to find the toilet. Do not assume they are incontinent; it could be a communication issue as discussed earlier. Careful monitoring and effective care planning can help. Be aware of their routine, when they are most likely to want to go and prompt them. Help them to keep their dignity by understanding their toileting needs. If they are incontinent, it is unlikely to have been done on purpose, so don t react in a negative way as this will undermine your relationship. Food and Drink Service user/patients may lose the ability to eat and drink and may need more and more assistance as their dementia progresses. Initially prompting or sitting with them and eating your lunch may be enough assistance. Later they may need you to assist. Always go at their pace and encourage them to do what they can. It may be an idea to introduce finger food if they are struggling with cutlery. If swallowing becomes an issue they may need a pureed diet. Do not mix all the food together; keep foods separate so they can still enjoy the flavours of different foods. For example peas, carrots, mash and minced beef. Sexual Relationships People with dementia often lose their sexual inhibitions and can be offensive to others. They may say inappropriate things, make sexual remarks and/or advances, masturbate and/or get aroused in front of people and actively seek out a sexual relationship. Risk assessments and effective care planning will help you to work with this side of the service user/patient s condition. There are some resources below about how to deal with inappropriate sexual behaviour. VIDEOS Dementia and wandering: Dementia and inappropriate sexual behaviour: Dementia and incontinence: 4

5 Getting diagnosed with Dementia: Mental Capacity Act Ada s Story: An introduction to the brain: What is dementia? Diagnosing dementia: Bill and Pat Wilson In their own words - Alzheimer s Society - USEFUL WEBSITES Deprivation of Liberties: Meaningful activities (half-done approach): Supporting dementia (in a care home): Dementia and sexual behaviour: Dealing with inappropriate sexual behaviour: Parkinson s: Dementia UK - Podcast diagnosing dementia - Alzheimer s and possible DDT link: Alzheimer s Society - Alzheimer s research UK - Type 3 Diabetes: NHS Choices About Dementia: 5

6 Mental Capacity Act - REFERENCES Choices, N. (n.d.). Alzheimer's Disease. Retrieved June 15, 2014, from NHS Choices: Choices, N. (n.d.). What causes dementia? Retrieved June 15, 2014, from NHS Choices: Mark Walsh, T. B. (2005). Health and Social Care NVQ 2 Candidate Handbook. Cheltenham: Nelson Thorne Ltd. Nolan, Y. (2005). Health & Social Care (Adults) Level 3. Oxford: Heinemann Educational Publishers. Nolan, Y. (2005). Health and Social Care (Adults) Level 2. Harlow, Essex: Pearson Education Limited. Society, A. (n.d.). Mental Capacity Act Retrieved June 15, 2014, from Alzheimer's Society: Society, A. (n.d.). What is Dementia? Retrieved June 15, 2014, from Alzheimer's Society: Healthwatch Torbay (2014). Retrieved September from: Reviewed 01/02/17 6