Alzheimer s Society Response. Alzheimer s Society response to the ILC Electrical Safety review

Transcription

1 Alzheimer s Society Response Alzheimer s Society response to the ILC Electrical Safety review September 2014 Consultation Response

2 September 2014 To Whom It May Concern: Alzheimer s Society welcomes the opportunity to comment on this consultation. Alzheimer s Society Alzheimer s Society is the UK s leading support and research charity for people with dementia, their families and carers. We provide information and support to people with any form of dementia and their carers through our publications National Dementia Helpline, website and more than 2,000 local services. We campaign for better quality of life for people with dementia and greater understanding of dementia. We also fund an innovative programme of medical and social research into the cause, cure and prevention of dementia and the care people receive. Some evidence from this response is based on research with 17 people with dementia and carers conducted in The full report on this can be found here: Dementia and electrical safety How could the symptoms of dementia effect electrical safety in the home? Each person is unique and will experience dementia in their own way. The different types of dementia tend to affect people differently, especially in the early stages. How others respond to the person, and how supportive or enabling the person's surroundings are, also greatly affect how well someone can live with dementia. Many issues relating to electrical safety are true across the normal ageing process. However, having dementia can place a person at higher risk of experiencing some of these issues. The type of risks they face, and strategies to manage these, will depend on the individual and their situation. Broadly, the symptoms of dementia could affect electrical safety in the home due to increased forgetfulness, difficulties sequencing tasks and problems in orientation. The combination of these factors mean that a person may have more difficulties carrying out everyday tasks, such as cooking a meal, and are at greater risk of problems with electrical devices. This could include: - Misuse of electrical equipment - Forgetting to turn electrical equipment off - Being unsure about how to respond to a problem with electrical equipment Symptoms of dementia

3 A person with dementia will have cognitive symptoms (problems with thinking or memory). They will often have problems with some of the following: day-to-day memory difficulty recalling events that happened recently concentrating, planning or organising difficulties making decisions, solving problems or carrying out a sequence of tasks (eg cooking a meal) language difficulties following a conversation or finding the right word for something visuospatial skills problems judging distances (eg on stairs) and seeing objects in three dimensions orientation losing track of the day or date, or becoming confused about where they are As well as these cognitive symptoms, a person with dementia will often have changes in their mood. For example, they may become frustrated or irritable, withdrawn, anxious, easily upset or unusually sad. With some types of dementia, the person may see things that are not really there (visual hallucinations) or believe things that are not true (delusions). Dementia is progressive, which means the symptoms gradually get worse over time. How quickly dementia progresses varies greatly from person to person. A person with dementia, especially in the later stages, may have physical symptoms such as muscle weakness or weight loss. Changes in sleep pattern and appetite are also common. Could the type of dementia a person has affect the potential electrical safety risks? The risks of electrical safety are largely the same across types of dementia, as confusion and problems sequencing tasks are similar across most forms. However, particular symptoms of dementia with Lewy bodies include fluctuating alertness, difficulties with judging distances and hallucinations. These could pose different difficulties in maintaining effective use of electrical devices. Common Types of dementia Alzheimer's disease This is the most common cause of dementia. Brain cells are surrounded by an abnormal protein and their internal structure is also damaged. In time, chemical connections between brain cells are lost and some cells die. Problems with day-today memory are often noticed first, but other symptoms may include difficulties with: finding the right words, solving problems, making decisions, or perceiving things in three dimensions. Vascular dementia If the oxygen supply to the brain is reduced because of narrowing or blockage of blood vessels, some brain cells become damaged or die. This causes vascular dementia. The symptoms can occur either suddenly following one large stroke, or over time through a series of small strokes or damage to small blood vessels deep

4 in the brain. The symptoms of vascular dementia vary and may overlap with those of Alzheimer's disease. Many people have difficulties with problem-solving or planning, thinking quickly and concentrating. They may also have short periods when they get very confused. Mixed dementia This is when someone has more than one type of dementia, and a mixture of symptoms. It is common for someone to have Alzheimer's disease and vascular dementia together. Dementia with Lewy bodies This type of dementia involves tiny abnormal structures (Lewy bodies) developing inside brain cells. They disrupt the brain's chemistry and lead to the death of brain cells. Early symptoms can include fluctuating alertness, difficulties with judging distances and hallucinations. Day-to-day memory is usually affected less than in early Alzheimer's disease. Dementia with Lewy bodies is closely related to Parkinson's disease and often has some of the same symptoms, including difficulty with movement. Frontotemporal dementia (including Pick's disease) In frontotemporal dementia, the front and side parts of the brain are damaged over time when clumps of abnormal proteins form inside nerve cells, causing them to die. At first, changes in personality and behaviour may be the most obvious signs. Depending on where the damage is, the person may have difficulties with fluent speech or may forget the meaning of words or objects. The symptoms of these types of dementia are often different in the early stages but become more similar in the later stages. This is because more of the brain becomes affected as the different diseases progress. How can older people with dementia be enabled to stay in their homes longer without being placed at risk of electrical safety issues? There are a variety of ways in which older people can be enabled to stay in their homes for longer. These include: Seeking advice from an occupational therapist Occupational therapy provides practical support to help people do the things they need and want. Occupational therapists can: suggest ways to carry out daily living activities (eg bathing, eating, dressing) help to select and use assistive technology and equipment to enable safe activity, and make adaptations to the home assist with participation in a wide range of activities to help with physical, psychological, social and spiritual wellbeing provide advice to carers

5 Making adaptations to the home As people get older they may experience difficulties in managing everyday activities such as cooking or bathing, for a variety of reasons. People with dementia may experience additional challenges as their dementia progresses, because of memory problems or a reduced ability to carry out tasks in the correct sequence. Adapting the home can help people with dementia to maintain their independence and reduce the risk of harm. It can also help to adapt some everyday tasks slightly. The following tips may help: - Label cupboards and objects with pictures and words so that they can be identified. - Where possible, use devices that only have one function and are easy to identify, for example a kettle. - Place clear instructions that can easily be followed somewhere visible. - Make sure the kitchen is well lit. - If there are concerns about using gas or electrical appliances inappropriately, contact the gas or electricity company and ask for the person to be put on the priority service register. This means that they will be eligible for free regular safety checks and will be able to get advice about safety measures such as isolation valves (advice is also available for carers). - Fit an isolation valve to a gas cooker so that the cooker cannot be turned on and left on. Devices are also available for electric cookers. - Look into products that may help to maintain independence and safety such as electric kettles that switch off automatically. - If the person's ability to recognise danger is declining, consider removing potentially dangerous implements such as blenders, but place other items for everyday use within easy reach. Avoiding fire There are ways to minimise the risk of fire in the home, including fitting smoke alarms and carbon monoxide detectors, and checking home appliances. There are also technologies that can support safety, as discussed in answer to a later questions. Using support networks If a person is on their own for long periods of time, or if they live alone, it is a good idea to establish if there is anyone (possibly a relative, friend or neighbour) who they would like to support them. If appropriate, they may be able to keep a spare set of keys and the phone number of who to contact if any concerns arise. Furthermore, homecare workers and family carers should have access to appropriate training to ensure they are knowledgeable about the impact of dementia on safety at home. What are the advantages of them staying in their own homes?

6 Two thirds of people with dementia live in the community 1, and many of they are owner-occupiers 2. Many people with dementia want to live at home for as long as possible. Often, this is with support from others. For a person with dementia, moving house has the potential to be confusing and disorientating. They may be familiar with their home environment and may have co-morbidities such as sight loss that make navigating a new environment even more challenging. However, it can be difficult managing everyday situations if you have dementia, particularly as the dementia progresses and you get older. As a result, some people may not be as safe at home as they used to be. It is important to find the right balance between independence and unnecessary harm. The person with dementia should, where possible, be involved in decisionmaking and their consent sought and given about changes. If this is not possible, it is important that those making the decision do so in the person's best interests. Beyond important issues on quality of life for people with dementia, there is also a broad societal cost of different living environments. The average annual cost per person living with dementia in the community with dementia is 29,298 each year 3. This includes the costs of health care, social care, unpaid care and other costs. A year in residential care costs an average of 36, For each person who is able to live at home there is a saving of 7,440 per person per year. Is there a role for smart technology to reduce electrical safety hazards for dementia sufferers, both at home and in residential settings? Assistive technology can: - promote independence and autonomy, both for the person with dementia and those around them - help manage potential risks in and around the home - reduce early entry into care homes and hospitals - facilitate memory and recall - reduce the stress on carers, improving their quality of life, and that of the person with dementia. There are many different technologies that can be adapted to the needs of someone with dementia. Those that will be particularly useful for reducing electrical safety hazards for people with dementia are: memory aids, such as reminder messages, clocks with large faces or notice boards for messages equipment to help people to continue to participate in household activities such as cooking and cleaning, including kettle tippers and adapted kitchen tools 1 Alzheimer s Society (2014). Dementia UK: Second edition. London: Alzheimer s Society 2 Alzheimer s Society (2012). Home truths: Housing services and support for people with dementia. London: Alzheimer s Society 3 Alzheimer s Society (2014). Dementia UK: Second edition. London: Alzheimer s Society 4 Ibid.

7 mobility aids, including walking frames and wheelchairs safety devices, such as gas detectors and water-level alerts Telecare can be a particularly useful form of technology for maintaining safety in the home. The name 'telecare' refers to devices that continuously, automatically and remotely monitor real-time emergencies and lifestyle changes over time to manage risk. Sensors around the home can be linked via a telephone line to a nominated person or call centre. The system monitors a person's activities and, if a problem occurs, triggers an alarm to a relative, keyholder or call centre. Sensors can be used to detect a range of situations that could indicate a potential hazard, including: - Floods sensors can be fitted on skirting boards or floors in the kitchen or bathroom. If the taps have been left running and cause a flood, which in turn could cause an electrical hazard, the system will shut off the water and raise the alarm. Specially designed plugs can also be used to prevent floods from taps that have been left running. - Extreme temperatures sensors will send a warning signal if the temperature is very low, very high, or if there is a rapid rise in temperature. This can be useful in the kitchen, for example to detect a pan that has boiled dry, and can also detect if the temperature in a room is low enough to pose a risk of hypothermia. - Gas sensors detect if someone forgets to turn the gas off, and a device will automatically shut off the gas and raise the alarm. Technologies should enhance and enable independence but they do have the potential to produce less positive outcomes. For example, if a device is misused it may replace human contact with the person with dementia, or restrict rather than enhance their freedom of movement. Some people might even find that the very presence of the equipment reminds them about their memory problems, which can cause distress. Importantly, no one should be forced into using technology if it is not right for them. The person with dementia must be involved in the decision making and their consent sought and given, where possible. Where this is not possible, it is vital that people making the decisions have the person's best interests at heart. The Mental Capacity Act (2005) provides a legal framework to support decision-making in cases where a person does not have the capacity to make their own informed decisions What is the role for care homes in ensuring the electrical safety of people with dementia?

8 One third of people with dementia live in care homes, and around 70% people in care homes have dementia or significant memory problems 5. Given the high prevalence of dementia in care homes, ensuring electrical safety of people with dementia should be a priority. Whilst the majority of care of people with dementia in residential care is good, there remain unacceptably high levels of noncompliance and occasional shocking incidences of unacceptable care. Many people with dementia in residential care still don t enjoy a good quality of life 6. There remain significant levels of non-compliance with standards. CQC s latest state of care report 7 shows around 10% inspections uncovered problems with either safeguarding or safety, staffing, or the care and support received by residents. Some issues to do with electrical safety are negated by residential care, because many residents will not be carrying out activities such as cooking. Regardless of this, care homes should be designed with the needs of people with dementia in mind and should comply with existing CQC regulation on resident safety. What will the future look like in regards to the electrical safety of people with dementia? - New housing developments to comply with Lifetime Homes regulations, in order to make it as easy as possible for people with dementia to remain in their homes without significant adaptation. - People with dementia supported by Occupational Therapists, trained home care workers and family carers to safely use electrical devices. - People with dementia supported through appropriate home adaptations and assistive technologies to maintain their independence. - Care homes to maintain compliance with safety regulations and to support residents to use electrical equipment safely. For more information please contact Anna Dowrick Senior Policy Officer, Alzheimer s Society anna.dowrick@alzheimers.org.uk 5 Alzheimer s Society (2014). Dementia UK: Second edition. London: Alzheimer s Society 6 Alzheimer s Society (2012). Low expectations: attitudes on choice, care and community for people with dementia in care homes. London: Alzheimer s Society. 7 Care Quality Commission (2013). The state of health care and adult social care in England. London. The Stationary Office.