Dementia Carer s factsheet Who is this factsheet for? This factsheet is for people caring for someone who may be experiencing memory problems or who has a diagnosis of dementia. Contents Page What is dementia?... 2 What can staff do to help people with dementia?... 3 Forget-me-not scheme... 3 This is me leaflet... 3 Capacity to make decisions..4 Flexible visiting hours... 4 Getting help as a carer... 5 Helplines and support groups... 6 About us.... 7
Why do you want to know if my relative or friend has problems with their memory? We routinely ask patients over the age of 75 if they have problems with their memory to identify if they need further investigation, advice or support. Memory problems are common in older people and can be caused by several things, such as infection, medication, depression and anxiety. However, they may be an early sign of dementia. Making a dementia diagnosis is important as it ensures that your relative or friend can access available treatment, support and care. If your relative or friend is experiencing memory problems but does not have a diagnosis of dementia, we may arrange for some routine investigations whilst they are in hospital. These may include memory tests, urine and blood tests, heart monitoring and a brain scan. If needed, we will ask your relative or friend s GP to arrange a further assessment after discharge from hospital. The GP may then make a referral on to the local memory service. If your relative or friend already has a diagnosis of dementia, we will speak to you about how you are coping, what care and support you have and whether more support is needed. What is dementia? Dementia is a common condition and one in three people over the age of 65 will develop dementia in the UK. It can also affect people under the age of 65 and this is known as young-onset dementia. The term dementia describes a set of symptoms that include: Loss of memory. Problems with thinking, concentration and decision-making. Difficulty with speech and language. Changes in mood and behaviour. Difficulty completing everyday activities and tasks. Some of the changes you might notice about your relative or friend are: Difficulty remembering recent events or learning new information, but being able to recall things that happened in the past. Feeling confused or lost even when in familiar surroundings. Forgetting the names of friends or relatives and of everyday objects. Difficulty making decisions or planning future events. Losing the thread of what is being said and needing prompts to carry on a conversation. Repeating things they have already said or done before. Losing things and thinking other people are to blame. Feeling irritable or upset and worrying about having memory problems. Needing help with looking after the home, such as washing and ironing, shopping and paying the bills. Needing help with personal activities such as eating, washing or dressing. 2
What can staff do to help people with dementia? When people with dementia are in hospital their memory problems may appear worse. This may be because they are in a busy and unfamiliar environment, or due to acute confusion (delirium) caused by physical illness such as infection, anaemia, dehydration, constipation or drug toxicity (please ask for a copy of our leaflet about delirium). Our staff receive training to make them aware of the difficulties experienced by people living with dementia. Our dementia champions ensure that people living with dementia are cared for well whilst they are in hospital. Our mental health liaison team is available to provide advice and to support the care of people with dementia in hospital. It is not always immediately apparent to staff that someone has memory problems or a diagnosis of dementia. Some people with dementia can also experience difficulty communicating their needs to others. We use the Forget-Me-Not scheme and This is Me leaflets to help improve communication and care of people with dementia and to enhance their safety and well-being whilst they are in hospital. Forget-me-not scheme We use a forget-me-not symbol and a blue wristband to help staff recognise that your relative or friend is experiencing difficulties with their memory. Forget-Me-Not encourages staff to take more time when speaking with patients who have difficulty understanding information and to offer additional help or support with activities where needed, such as eating, washing, dressing or being accompanied off the ward. Your relative or friend does not have to take part in this scheme if they or you prefer not to. This is Me leaflet This is Me is a leaflet that shares information about your relative or friend s life history and their personal needs, likes, dislikes and preferences for care. This is Me allows staff to get to know your relative or friend and care for them better. The leaflet is kept by the patient and can be shared with care staff in other hospital and care settings, and at home. 3
Carer s comment Completing This is Me is very, very important, as it can be the one thing that will make the difference to both staff and patient. The greater the detail the easier it will be for staff to manage situations. Son caring for his mother Please ask staff for more information about Forget-Me-Not and a copy of This is Me. The leaflet will need to be updated as your relative or friend s needs change and free copies are available from the Alzheimer s Society (see end of leaflet for contact details). What if my relative or friend does not have capacity to make decisions? People with dementia may lack capacity to make decisions about their care and treatment due to their memory problems. Where possible your relative or friend should have the opportunity to make informed decisions about their care and treatment, in partnership with their families and healthcare professionals. If your relative or friend lacks the capacity to decide who should and should not be involved in their care decisions, healthcare professionals must act in their best interests bearing in mind the provisions of the Mental Capacity Act, 2005. Healthcare professionals should take into account the views of carers and relatives when planning treatment and care. Tell staff if your relative or friend has a personal welfare lasting power of attorney and who they have appointed to act on their behalf. Tell staff if your relative or friend has an advance care plan. If you do not live locally to the hospital and are unable to visit, you can ask for a referral to be made to an Independent Mental Capacity Advocate whose role is to ensure that decisions are made in your relative or friend s best interests. Do you allow flexible visiting hours? Some people with dementia prefer care activities to be carried out by someone who is familiar to them. Flexible visiting enables family and friends to remain involved in their relative or friend s care, such as helping at mealtimes or with personal care. Discuss with staff how you can help care for your relative or friend whilst they are in hospital. 4
What can you do to help your relative or friend in hospital? Ensure staff are aware that you are the main carer for your relative or friend. Share information with the staff about your relative or friend s condition, the help they need and how they like to be looked after. Ask staff for a This is Me leaflet which you and your relative or friend can complete. Bring in personal items such as photographs, clothing or toiletries that are familiar to your relative or friend and can help them recognise their bed space. Ask to speak with a dementia champion if you would like more information about dementia. Tell staff if you need more support with caring for your relative or friend. Keeping active is important Try and engage your relative or friend in activities such as listening to music, reading newspapers or magazines and talking about current affairs, or playing card games and quizzes. This will help keep them stimulated whilst they are in hospital. People with advanced dementia may prefer more sensory or tactile activities such as hand massage, furry toys, or rummage bags (mixed materials or textures). How can I get help for myself as a carer? People living with dementia may need a lot of support and care from family and friends. Caring for someone else means it can be easy to ignore your own needs. You have the right to an assessment of your own needs as a carer and may be eligible for support from social services. A range of services and organisations are available to support people with dementia and their carers. The help that is available for carers includes: Getting information about dementia and the support that is available. Getting advice and support to help you care for your relative or friend. Getting help to organise a break from caring such as sitting services or respite care. Therapeutic interventions such as carer education groups, counselling, supportive and coping strategy based therapies. What support is available to help me nationally and locally? Helplines Information, support and advice are available through specialist national helplines. The information available is free to carers and people living with dementia and ranges from coping with day to day care to more complex advice, such as legal and financial matters. Below are organisations you can contact for further information about caring for someone with dementia: Admiral Nursing Direct Tel: 0845 257 9406 or email direct@dementiauk.org 5
Alzheimer s Society Tel: 0300 222 1122 or email enquiries@alzheimers.org.uk Carers UK Tel: 0808 808 7777 or email advice@carersuk.org Age UK Advice Tel: 0800 169 6565 Carers support groups The Alzheimer s Society provides local carer support groups where you can get information, support and advice about caring for someone with dementia and meet with other carers who have similar experiences. Their contact details are: Islington Alzheimer s Society Tel: 0207 561 4820 or email islington@alzheimers.org.uk Haringey Alzheimer s Society Tel: 020 8937 7171 or email haringey@alzheimers.org.uk Carers Hub The Carers Hub provides advice and information to carers through weekly drop in or planned advice sessions. Their contact details are below: Islington Carers Hub Weekly advice sessions are held at the Whittington Hospital. For an appointment: Tel: 0800 085 1141 / 020 7561 5517 Wood Green Carers Hub Weekly drop in and individual advice sessions are held at Wood Green Library. Tel: 020 8489 4560 Social services Social services offer help, advice and information on accessing community care services. This includes providing assessments to people with social care needs and arranging care services if you are eligible. Islington's Access Service Tel: 020 7527 2299 or email: access.service@islington.gov.uk Haringey Access Team Tel: 020 8489 1400 or email: IAT@haringey.gov.uk If you are concerned about harm to or from your relative or friend contact the Safeguarding Adult teams on the telephone numbers for Islington or Haringey Social services. 6
Action on Elder Abuse Action on Elder Abuse works to protect and prevent the abuse of vulnerable older adults. They offer advice and support to vulnerable older adults, who may be experiencing or be at risk of abuse. Helpline Tel: 0808 808 8141 or email: enquiries@elderabuse.org.uk Website: www.elderabuse.org.uk About us Whittington Health is part of the national and local Dementia Action Alliance and is actively striving to improve care for people with dementia and their carers. We are achieving this by: Ensuring all our staff have access to training on dementia. Using the This is Me document and the forget me not scheme. Providing relevant information about dementia and the support available. Whittington Health Magdala Avenue London N19 5NF Phone: 020 7272 3070 Date published: 03/06/2015 Review date: 03/06/2017 Ref: ICAM/COOP/Dem/01 Whittington Health Please recycle Facebook/whittingtonhealth @whithealth 7