Living With Dementia
Memory Navigation Service Bedfordshire
Living With Dementia
During the earlier stages of dementia, you may notice that symptoms become progressively more noticeable and the need for support will begin to increase.
During this stage you may begin to experience changes in behaviour. Alzheimer’s Society have described how symptoms are likely to develop:
Existing Problems With Memory & Thinking Will Begin To Worsen
Many people find it harder to recognise family or close friends. They may confuse them with strangers. Remembering new information will also get harder. This may cause the person to repeat the same question over and over.
The Way A Person Speaks Or Uses Language Is Likely To Get Worse
They may have problems finding the right word and they may forget what they are saying mid-sentence. It may get harder for them to follow what someone else is saying.
Problems With Orientation Also Become More Severe
Someone may get confused about the time of day – for example, they may get up and dressed in the middle of the night. Or they might get confused about where they are, even at home.
Symptoms of Apathy, Depression & Anxiety
These tend to continue into the middle stage of dementia.
In This Stage, Many People Start To Strongly Believe Things That Aren't True
They often feel other people are going to harm them or cannot be trusted (paranoia). It is very common for a person to believe that someone is stealing from them or that a partner is being unfaithful.
A Person At This Stage May Also Start To See & Hear Things That Aren't There
This is more common in the middle stage of Alzheimer’s disease than in vascular dementia. (Visual hallucinations in dementia with Lewy bodies are a symptom in the early stage.)
What Can I do?
Below is a list of activities, information and considerations that will be useful to think about as early as you can.
Advance Care Planning
This can be a difficult discussion, however during the earlier stages of dementia this may be the ideal opportunity to have these conversations with your family and friends. Often this may be the first time someone’s wishes have been discussed. Further along the journey, when an advanced care plan is in place, this helps family make decisions with the knowledge that they are following the wishes of the person they are caring for.
Visit NHS England and NHS Improvement -Advance Care Planning website for further information.
Attendance Allowance
A non means-tested national benefit which can be applied for through the Department for Work and Pensions (DWP). This is for those who need day to day assistance and are of state pension age or over. To apply contact DWP to request a form and you will be given six weeks to complete and return, if awarded they may be able to backdate your payment to the date you made the request. If you would like help to complete this long form, Age UK Bedfordshire provide a free form filling service.
For further information visit www.gov.uk/attendance-allowance.
Blue Badge
A blue badge entitles someone to use disabled parking in order to park closer to your destination. This can be awarded to people who cannot walk far but also to those who may find walking to their destination causes psychological distress or could endanger themselves or others due to a mental health condition or dementia.
For further information visit www.gov.uk/apply-blue-badge .
Local council information:
Carers Assessment
All Carers are entitled to a Carers Assessment through their local authority. This assessment will look at how your caring responsibilities affect your wellbeing and may recommend specific support. This does differ depending on whether you live in Central Bedfordshire or Bedford Borough. Depending on your individual financial circumstances you may qualify for assistance with costs.
Carers Grant
If you provide substantial care as an unpaid Carer, a Carers Grant can enable you to take up a break, activity, service or training that will improve your health or wellbeing. As a Carer registered with us, you can apply for a grant online through our website or by post.
Our independent panel reviews each application and makes awards against grant criteria. We will send you an email or a letter after the panel has been held at the end of each month.
Find out further information about how to apply for a Carers Grant.
Continuing hobbies/social activities/meeting friends
It can be difficult to continue with friendships, hobbies and social activities when you are caring for someone else day to day, and often this means that carers will lose touch with friends or stop taking part in their hobbies. It can be hard to prioritise yourself, but try to make time, even if this is less than before. If you need some time where the person you care for is being looked after by someone else, please access a Carers Assessment (see section above) from your local authority.
Council tax reduction
If you receive Attendance Allowance and have a diagnosis of dementia you could be entitled to a reduction in your council tax. A form from your local authority will need to be completed and returned with evidence to document your receipt of AA and confirmation of your diagnosis. The form you need to complete is called ‘severe mental impairment’.
Driving
Receiving a diagnosis of dementia does not mean that you will need to stop driving, if you are considered safe to drive you can continue until your consultant recommends you stop. However, you must inform the DVLA if you receive a dementia diagnosis. Complete the form at: www.gov.uk/dementia-and-driving.
Bedfordshire Fire and Rescue Service – Home Fire Safety Visits
If you would like to receive a visit to your home or receive advice by telephone, please contact Bedfordshire Fire and Rescue Service with your name, address and telephone number mentioning ‘Dementia Safety First’.
Register for a Home Fire Safety Visit on the Fire Service website or call 0800 043 5042.
Home adaptations and telecare
Age UK gives several ideas on how to adapt a home. The local councils can help with any major adaptations that might be needed (subject to eligibility). See Bedford Borough Council and Central Bedfordshire Council. Age UK Bedfordshire offers a handyperson service to help with small DIY jobs.
It might be a good idea to put up a key safe outside the front door in case the person you care for cannot come to the front door. Age UK Bedfordshire supply and fit key safes (there is a cost). Contact on 01234 360 510.
If you are concerned about a person’s safety in the home you might find that Telecare will provide peace of mind
Hospital Support – Carers Hub & Dementia Specialists
At the Carers Hubs (formerly Carers Lounges) in Bedford Hospital you can receive support in a safe and confidential setting. We know a hospital admission can be scary for both you and the person you care for and we are experienced in understanding hospital processes around discharge and continuing care once back in the community.
We can help with information, advice, practical or emotional support, as well as liaise with hospital staff if you have any queries about the treatment of the person you care for, or around discharge arrangements. If you are visiting the hospital or attending an outpatient appointment with the person you care for, then pop in and say hello. Find out more about the Carers Hubs.
In both Bedford Hospital and Luton and Dunstable University Hospital there are specialist Dementia Nurses available to assist you during your stay or that of a family member.
[email protected] Tel: 07816366320
[email protected] Tel: 07816366313
Lasting Power of Attorney
Applying for lasting power of attorney (LPA) early is useful to plan for the future and ensure those you trust can make decisions on your behalf if you are unable to. There are two types of LPA, one for health and welfare, and the other for property and finances. Both types are important for different reasons. You can learn more about how to apply at www.gov.uk/power-of-attorney.
Making a Will
To layout your wishes for your property and finances after you are gone visit www.gov.uk/make-will/writing-your-will.
Assessment of Need
This assessment can look at what care and support needs there may be, and suggestions could be made as to what this might look like. You may wish to have Carers visiting to assist with providing personal care or checking in to assist with medication or mealtimes. Depending on your individual financial circumstances you may qualify for assistance with costs.
Planning for Emergencies
What would you do if you cannot continue caring due to an accident or ill-health? It’s worth taking some time out to give this some thought and give you peace of mind.
To help we have created for you to fill in. If you would like some help, you can talk to a Support Worker.
You can also:
- Keep an In Case of an Emergency (ICE) record on your phone stating that you are a Carer and the name and address of the person you care for. Read more.
- Keep a Carers Emergency Card in your purse/wallet – available from Central Bedfordshire Council.
- Keep a Message in the Bottle in your fridge (available from Carers in Bedfordshire, your GP surgery or the Lions Clubs website).
Staying healthy and active
Staying active is important to maintain your own mental and physical wellbeing. If you can take part in regular activity this may help you to continue caring for your family member or friend for longer.
For those who would like to get together with others, you can find out more about the groups available on our What’s On guide. Some of these take place in person in various locations across the county. However, if you are unable to leave your home, you may be able to join an online exercise session.
Try to make sure you eat well, find time to exercise and get enough sleep if you possibly can. If you are struggling to maintain your own wellbeing, you may find it helpful to talk to our Wellbeing Practitioner. Speak to one of our Support Workers who will put you in contact.
Take a break
Contact Social Services which can arrange day care and respite care. Social Services can also arrange a Carers Assessment which might help with arranging a short break. You can apply for a Carers Grant (see section above) to help with the cost of something to help your health and wellbeing.
Respite options
Respite care is short-term care to give Carers a break from caring. This can enable Carers to visit family, take a holiday or recharge. This may be a short stay in residential care, or it is sometimes possible to arrange care at home. Depending on your individual financial circumstances you may qualify for assistance with costs.
It is useful to speak to your local authority to discuss your options for having a break.
When care needs to increase
In time you may need help to look after the person you are caring for. This may mean having additional assistance with providing personal care, support with medication and helping with meals. If you already have care in place, you may be able to increase this.
You can discuss this with a social worker during a Needs Assessment (see section above) and they can help you decide the next steps. Depending on your individual financial circumstances you may qualify for assistance with costs.
View the Directory of Care Agencies and Residential Care Providers in Bedfordshire.
Find more information on the Carers in Bedfordshire website.
Herbert Protocol
The Herbert Protocol is a national scheme designed not only to prevent people living with dementia going missing but to improve responses for locating them if they do.
The Herbert Protocol is a quick form and photo ID stored within the police database and used if needed regarding these vulnerable people. Those registered can also receive a lanyard, wrist band or bag tag with a QR code to help relocate people with their families.
It would be helpful for families where there is a person with dementia, to complete this form and let the police have it on their files to make things more efficient should a person with dementia go missing.
Please print this form and hand in to Bedfordshire Police or follow the email instructions on the form.
Alternatively, the form can be completed and submitted directly online through the Bedfordshire Police website here.
Register With Us
By registering with us as a carer you will get access to a whole range of services, including advice, information, access to our groups, events and carers grants.
Need to Talk To Someone?
You can book a 20min call with one of our Memory Navigators at a time that suits you. Alternatively give us a call in office hours on 0300 111 9090
