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1 Memory Information Support Booklet A resource for carers and families of people experiencing memory difficulties in West Lothian www.cowl.org.uk
Introduction What's included? Worried about someone’s memory? Are you a carer? How things change Communication Future planning MIST journey Financial wellbeing Legal planning Keeping independent & well at home Looking after yourself Social work assessments Adult carer support plans Useful telephone numbers 4 6 7 8 9 11 14 16 18 19 20 21 22 Sections in this booklet: This resource is designed for individuals and families supporting someone living with memory difficulties in West Lothian. We understand how challenging it can be to watch someone you care about experience changes in their memory. Our hope is that this booklet offers helpful information, practical advice and guidance on what to do next and where to find further help and support in your caring role. The Memory Information Support Team (MIST) is a partnership project that supports unpaid carers and family members who are helping someone experiencing memory difficulties earlier in their journey. By offering emotional and practical support at an earlier stage, we aim to ensure you feel informed, confident and prepared for what may lie ahead for both you and the person you care for. MIST provides a safe, supportive space for carers to share any worries or concerns they may have. We offer guidance, practical support, future planning, referrals and signposting to other helpful services. Our goal is to reduce isolation and help you build connections with others who are on a similar path. We offer a range of supports including Information sessions, workshops, support groups and wellbeing activities. These opportunities help you link in with a wider network of unpaid carers who understand what you’re going through. Our groups offer carers a space for peer support, with the reassurance that their supported person is well cared for, while giving you both the opportunity to take part in activities together. What is MIST? cowl.org.uk / support@carers-westlothian.com / 01506 448 000 / WhatsApp: 07719 064930 Scan the QR code to visit CoWL website cowl.org.uk / support@carers-westlothian.com / 01506 448 000 / WhatsApp: 07719 0649302 3
If you notice someone has memory difficulties or is struggling with thinking or everyday tasks, starting a conversation can be difficult. Feelings of embarrassment or fear can lead to delays in getting help. It’s also important to remember that some forgetfulness is a normal part of ageing. Things like occasionally misplacing glasses, forgetting a word, or taking a little longer to process information can be entirely typical and not always a sign of anything serious. These changes tend to be mild, don’t worsen quickly, and don’t stop someone from managing daily life. However, there are changes that are worth exploring further. These include getting lost somewhere familiar, finding it hard to complete everyday tasks they’ve always managed, regularly forgetting recent conversations or events, struggling to follow stories or instructions, or changes in mood or behaviour that seem out of character. Everyone’s experience is different, and noticing these patterns does not automatically mean dementia, but they can signal that further assessment would be helpful. If you’re worried, start by having a gentle, supportive conversation to see whether the person has noticed any changes themselves. It’s always a good idea to speak with the GP about your concerns. A physical health check-up is important, though it can sometimes be difficult to encourage your loved one to attend. It may help to explain that difficulties with thinking or daily tasks are sometimes caused by medical issues such as infections and vitamin deficiency, conditions that can be treated once identified. The GP may carry out cognitive tests (and possibly bloods or a CT scan). They may then refer the person to the Memory Treatment Service at St John’s Hospital for further assessment. Although a diagnosis of dementia is never pleasant, identifying the problem as early as possible opens the door to support for both you and the person you care for. Planning ahead is important, and later in this booklet you’ll find information on legal and financial arrangements that may help reduce stress down the line. Early intervention can make a big difference by getting you both the help you need and reducing avoidable worry or confusion. Worried about someone’s memory? We got an appointment together, and the GP was so helpful. “ I'm just Tom's wife, not his carer! In the meantime, encourage the person to keep familiar routines, stay connected with friends and family, and put simple supports in place for tasks they find more difficult, such as managing bills or remembering appointments. Keep an eye out for any concerns around money management or safety, and where possible, involve other family members or trusted friends for additional support. “ The MIST team at CoWL is here to offer support whenever you need it on your journey cowl.org.uk / support@carers-westlothian.com / 01506 448 000 / WhatsApp: 07719 064930 cowl.org.uk / support@carers-westlothian.com / 01506 448 000 / WhatsApp: 07719 0649304 5
Are you a carer? Many people who care after a loved one don’t realise they are a carer. They may see what they do as simply part of family life or just helping out. Recognising yourself as ‘a carer’ is important, even if it feels strange at first. It can open the door to support and resources that you are fully entitled to. By recognising yourself as a carer, you may find it easier to access financial support, respite opportunities and local networks. It also helps you have open, honest conversations with employers, health professionals, and social services, so that your needs and the needs of the person you care for are better understood and met. Caring can have a significant emotional and physical impact. Looking after your own wellbeing is essential, and you have the right to ask for support through an Adult Carer Support Plan. CoWL can tell you more about carers’ groups and other local services that help reduce the isolation many carers experience. Connecting with others in similar situations can be reassuring, they often understand what you’re going through and can share practical tips that make things a little easier. How things Change Over time, when you are caring for someone whose brain is changing, you may hear them say things they would never have said before or see them behave in ways that feel completely out of character. This can feel unsettling, and it’s natural to feel that your relationship is changing He always did the paperwork for the car, and the council tax, and I’m having to start learning all of that Memory loss and confusion means the person might not remember names and faces. It can be painful if they don’t remember who you are. They may also have increased frustration or anxiety. There are ways to continue with things that are fun and give you both comfort and security. Creating new routines is important to reduce stress. A sense of closeness can come from familiar activities, even in simpler forms. Ask for help from friends and family. It’s not unusual to feel sad and as if you are losing the person you love. This sort of grieving may not always be understood by others, and this is where a carers’ support group can help. As things change, finding new ways to communicate and connect can help preserve emotional closeness and support the wellbeing of both you and the person you care for. “ How things change Scan the QR code to visit CoWL website cowl.org.uk / support@carers-westlothian.com / 01506 448 000 / WhatsApp: 07719 064930 cowl.org.uk / support@carers-westlothian.com / 01506 448 000 / WhatsApp: 07719 0649306 7
Communication Things I wish I had known Be patient Ask one question at a time Avoid confrontation Stay engaged Be aware of your body language, facial expressions and tone of voice Give the person a little extra time to respond. Pauses or silence often just mean they are gathering their thoughts. Where possible use positive, compassionate and easy-to-understand language, avoiding jargon that might lead to confusion. Acknowledge their feelings and offer reassurance. Simple phrases like “I understand” or “It’s okay” can be very comforting. Focus on one topic at a time to avoid overwhelming your loved one. Offer simple choices rather than open-ended questions. Specific options can make things easier to process. For example, try saying “Would you like tea or coffee?” instead of “What would you like to drink?”. If they become confused, try not to correct them. Instead, gently redirect the conversation. Using distraction or guiding the discussion onto another topic can help ease frustration for both of you. Maintain gentle eye contact to show that you’re listening as this helps your loved one feel valued and heard. Try to reduce distractions such as background or loud noises, as these can make it harder to focus and concentrate. Sometimes being in close contact or eye line can help the person feel more relaxed and able to understand what’s being said. Creating a memory book in the early stages was the best thing we ever did and gave us a task we could do together. Use humour when appropriate and engage in activities together If things feel too overwhelming Learn as much as you can Pick your battles Laughter on both sides can enhance connection and ease stress. If things feel overwhelming, step out of the room for a moment, take a breath and count to ten. Protecting your own wellbeing can have a positive impact on the person you care for. Don’t be hard on yourself for what you didn’t know earlier. You’re doing your best. Learning as you go is part of caring for someone you love, let go of any guilt. Focus on what truly matters and let the small things go, this can ease stress for you both. “ cowl.org.uk / support@carers-westlothian.com / 01506 448 000 / WhatsApp: 07719 064930 cowl.org.uk / support@carers-westlothian.com / 01506 448 000 / WhatsApp: 07719 0649308 9
Future planning Everyone needs to plan for the future, but when someone is experiencing memory difficulties, planning becomes even more important. Thinking ahead allows the person to have a real say in their future care, finances and legal decisions while they’re still able to do so. It also helps reduce stress for carers, who want to ensure that their loved one’s needs will be met with dignity and care. Of course emergencies can happen unexpectedly. Having an emergency plan in place is especially helpful in case you, as the carer, become unwell or are suddenly unable to provide care. CoWL can support you to create a personalised emergency What sort of things should you think about? Legal and financial planning Support networks Health care planning Arrange important legal documents like a power of attorney, wills, and advance directives. Think about how care will be paid for and seek legal or financial advice. Talk with family and friends about how they can help, and explore local supports - including CoWL support groups. Discuss future preferences including decisions about treatments and support preferences. “Dad said in his directive that he would not mind going in a care home, but if he got ill he didn’t want any operations, just to be kept comfortable, if he wasn’t able to speak or decide at that time.” Living arrangements Think about how your home will accommodate increasing care needs and what alternatives there are. Safety and daily living Plan for any home adaptations to promote and encourage independence including reducing hazards and keeping safe. cowl.org.uk / support@carers-westlothian.com / 01506 448 000 / WhatsApp: 07719 064930 cowl.org.uk / support@carers-westlothian.com / 01506 448 000 / WhatsApp: 07719 06493010 11
The Memory Issue Journey Memory Worries Newly Diagnosed Future Planning • Concerns around forgetfulness or change of behaviors • Memory loss or confusion • Losing words • Changes in mood or personality • Struggling with ordinary daily tasks • Wandering or getting lost in familiar places • Seen at clinic by consultant • Possible medications to manage symptoms • Waiting list to access post-diagnostic Dementia Link Worker (up to 12 months of support) • Follow ups from Community Psychiatric Nurse (CPN) around medication checks if applicable • Possible referral to social work • Information • Support and management options The Memory Treatment Service • Full memory assessment with either Community Psychiatric Nurse (CPN) or Dementia Advanced Nurse Practitioner (ANP) at home • Await consultant appointment for next steps • Referrals to other supports and services • Power of Attorney • Emergency planning • Social care • Respite • Carer support • Adult Carer Support Plan You can consider these at any stage of the memory journey Seeing the GP • Discuss symptoms • Review medical history • Mini cognitive tests • Refer to memory service • Referral for CT Scan • Blood test cowl.org.uk / support@carers-westlothian.com / 01506 448 000 / WhatsApp: 07719 064930 13cowl.org.uk / support@carers-westlothian.com / 01506 448 000 / WhatsApp: 07719 064930 12
Financial wellbeing “I am new to the benefit system and the person dealing with me understood what I was looking for and gave me speedy advice. Excellent service, thank you!” There is financial wellbeing support available locally in West Lothian. These services can help you understand benefit entitlements for both you and the person you care for. The Advice Shop Citizens Advice Bureau The Advice Shop offers free, confidential, and impartial support with benefits, as well as energy advice, money and debt guidance, and housing issues. You can reach them on 01506 283000 or www.westlothian.gov.uk/ adviceshop The Advice Shop runs a financial wellbeing clinic specifically for carers registered with CoWL. If you’d like more information or want to book, please get in touch or scan here. Citizens Advice Bureau (CAB) West Lothian also provides free, impartial advice on benefits, debt, housing, employment, and other legal or financial matters. You can reach CAB on 01506 432977 or www.cabwestlothian.org.uk Put financial safeguards in place, such as a Power of Attorney. Ask the bank to enable fraud alerts. Set spending limits on credit or debit cards. Review bank statements regularly. Install call blockers or internet filters. Consider setting up a separate spending account with a small, manageable amount of money, keeping the rest safely in another account. Here are some ways to help protect someone who may be vulnerable due to memory difficulties: cowl.org.uk / support@carers-westlothian.com / 01506 448 000 / WhatsApp: 07719 064930 15cowl.org.uk / support@carers-westlothian.com / 01506 448 000 / WhatsApp: 07719 064930 14
Legal planning “I did my Power of Attorney first so Dad was less anxious when I suggested he sorts out his.” “It’s important to talk early on about preferences for medical treatment and care, like where they would prefer to live or medical interventions they’d want to refuse. We spoke to the GP and the rest of the family about recording and respecting these wishes” No one can make a will or grant Power of Attorney once they lose the capacity to make decisions, so it’s important to do this as early as possible. If this opportunity is missed, a Guardianship Order may be needed, but it can be a long process. A Power of Attorney can cover welfare, finances, or both. The person granting it can be specific about what they want, and a solicitor or the Office of the Public Guardian can provide guidance. If you become the Attorney, you may need to make decisions on their behalf if they can no longer do so. Make sure the document is registered as soon as possible. Even if it isn’t needed right now, having it in place offers vital protection and makes future decisions easier for everyone. A solicitor will explain when the Power of Attorney is activated and what decisions can be made. Proactive planning brings peace of mind and helps everyone feel more prepared. CoWL have a Power of Attorney Clinic in partnership with Solicitors for Older People in Scotland. For more information or to book into our free POA Advice Clinic, scan QR code or get in touch. More information available at Office of Public Guardian: www.publicguardian- scotland.gov.uk Proactive planning helps everyone to meet challenges with greater confidence and peace of mind. Scan QR code to get in touch cowl.org.uk / support@carers-westlothian.com / 01506 448 000 / WhatsApp: 07719 064930 17cowl.org.uk / support@carers-westlothian.com / 01506 448 000 / WhatsApp: 07719 064930 16
Keeping independent and well at home Life at home can be made easier with simple aids and adaptations. These can be bought, rented, or in some cases, provided by the West Lothian Health and Social Care Partnership. Looking after yourself Caring can be overwhelming, and if you don’t look after yourself, it becomes much harder to support someone else. Being kind to yourself is a priority. Regular breaks are important. This might mean respite care, support from family and friends, or bringing in professional help. Staying physically well, getting enough sleep, eating properly, staying active, and keeping up with your own medical needs is essential. Caring for someone with memory difficulties often involves coping with changes in behaviour, daily care tasks, and sometimes constant supervision. These pressures can lead to stress and isolation, but there is local help available. CoWL can support and guide you to financial support, practical services, and other resources that can reduce some of the strain. It’s completely normal to feel guilt, frustration, or sadness. Sharing experiences with others in similar situations can be incredibly comforting. CoWL offers emotional support and practical advice from people who understand the unique challenges of caring. “Mum struggled living alone after we got home from the hospital. The Home Safety Service talked through options from the pendant to sensors. The careline staff called us around any concerns for mum’s safety if unable to reach her.” Memory aids such as large calendars, reminder clocks, or digital assistants like Alexa Labels on cupboards, drawers, and rooms, plus clear signage to support orientation Here are some helpful ideas Reducing clutter and improving lighting to make moving around safer Assistive technology to monitor movement or detect falls Automated pill dispensers to support safe medication management “Caring for Mum is just what you do in a family and I wouldn’t change it. But I’m exhausted.” cowl.org.uk / support@carers-westlothian.com / 01506 448 000 / WhatsApp: 07719 064930 19cowl.org.uk / support@carers-westlothian.com / 01506 448 000 / WhatsApp: 07719 064930 18
Adult Social Work West Lothian Council social work can provide care and support for adults at home. Anyone can contact them and make a referral for social care support (called Self-Directed Support). On initial contact they’ll start their assessment to understand the needs of the person needing support. You answer questions so they can decide if someone needs care and if needed, what level of care and support they’ll provide. This is based on local eligibility criteria. Integrated Access Point 01506 280740 (Option 1) Referrals and enquiries are made to Adult Social Care adultsocialcare@westlothian.gov.uk www.westlothianhscp.org.uk/article/27425/ contact-us Adult Carer Support Plans An Adult Carer Support Plan (ACSP) is an opportunity to discuss with CoWL what support or services you may need to help you in your caring role. An ACSP looks at how caring affects your life including your physical, emotional, and mental wellbeing, and whether you are able and willing to continue caring. For young carers under 18 (or 18 and still at school), this is called a Young Carers Statement (YCS), completed by the CoWL Young Carers Service. Any carer who may need support can request an ACSP or YCS. You’re entitled to one regardless of: how much or what type of care you provide your financial situation whether you live with the person you care for whether you provide full time care You can request an ACSP whether or not the person you’re looking after has had a needs assessment, or if the local authority have decided they are not eligible for support. Carers can request an ACSP and YCS from CoWL to discuss how their needs and outcomes can be met. Self-Directed Support Journey for Adults Step 1: Make a referral Step 2: Initial assessment and eligibility check If you are eligible, you will then move to step 3 onwards Step 3: Assessment which is called ‘All About Me’ Step 4: Outcome Focused Assessment Calculate budget and contributions Step 5: Plan support Step 6: Put support in place Step 7: 4 week review Step 8: Annual support review CoWL can offer further advice and guidance on social work support and assessments. cowl.org.uk / support@carers-westlothian.com / 01506 448 000 / WhatsApp: 07719 064930 20 cowl.org.uk / support@carers-westlothian.com / 01506 448 000 / WhatsApp: 07719 064930 21
Useful telephone numbers Advice Shop 01506 283000 Adult Social Care - Integrated Access Point 01506 280740 (Option 1) Age Scotland 0800 12 44 222 Alzheimer Scotland 01506 533108 Blue Badge Scheme 01506 283000 (option 5) Carers of West Lothian 01506 448000 Chest, Heart & Stroke Scotland 0808 801 0899 Citizens Advice Bureau 01506 432977 Deaf Action 0131 556 3128 Dementia Helpline (24 hour) 0808 808 3000 Dementia UK 0800 888 6678 Diabetes UK 0345 123 2399 District Nursing 01506 280740 (Option 3) EARS Independent Advocacy Service 01506 205840 Food Train West Lothian 01506 413013 Health in Mind 0131 225 8508 HCL Transport (Dial-A-Ride & Dial-A-Bus) 01506 633953 MacMillan Cancer Support & Benefit Advice 0808 808 00 00 Marie Curie 0800 090 2309 Mental Health Advocacy Project (MHAP) 01506 857230 NHS 24 111 Occupational Therapy Service 01506 280740 (Option 2) OPAL 01506 815815 Parkinson’s UK 0800 1234 5678 Police Scotland 101 Salvation Army (Livingston) 01506 430272 Samaritans 116 123 Scottish Fire & Rescue Service 0800 0731 999 Sight Scotland 0800 024 8973 The Silver Line 0800 470 80 90 St John’s Hospital 01506 523000 Stroke Association 0303 3033 100 West Lothian Council 01506 280000 CoWL provides a wide range of services to support unpaid carers and disabled people across West Lothian. We offer emotional support, peer support, information and advice, signposting, courses, and opportunities for breaks from caring. Email: support@carers-westlothian.com Website: cowl.org.uk Phone: 01506 448 000 Provide practical help which includes delivering fresh food and groceries, delivering a portion of their own homecooked food, arranging social events with transport solutions, collecting and renewing library books and helping with jobs about the house. Phone: 01506 413013 Website: thefoodtrain.co.uk OPAL (Opportunities for Active Lives) Works with people 60+ empowering all to remain independent, living at home, and socially connected. Phone: 01506 815815 Email: opal@cyrenians.scot w: cyrenians.scot NHS Lothian’s Older People’s Community Mental Health Team are a MIST partner and support the development and delivery of the project. Referrals to this team are made via your primary care providers/your local GP. For non-emergency contact with NHS Lothian you can phone 111 Website: nhslothian.scot cowl.org.uk / support@carers-westlothian.com / 01506 448 000 / WhatsApp: 07719 064930 22 cowl.org.uk / support@carers-westlothian.com / 01506 448 000 / WhatsApp: 07719 064930 23