Some suggestions for common dilemmas

Unfortunately, we do not provide this service. However, we will help and advise you about having a carer at home – see the question “My mother needs to have a carer…” below.

We support any person and their family who has a diagnosis of dementia, is living at home and registered with Westongrove GP partnership – Wendover Health Centre, Aston Clinton Surgery or Bedgrove Surgery. You can review the Westongrove GP partnership practice boundary here.

It can be lonely being married to someone who is developing dementia. Many husbands and wives say that they are grieving as their life companion changes and many find it difficult adjusting to the fact that they are not always getting the loving support they used to get from their marriage. It is common for family, friends and society to still view them as a couple who are able to provide companionship for each other and do not realise that this may no longer be the case. However, there are a number of things that you can do…

• Tell your family and friends that you are lonely and ask them for much more frequent social contact, even if it has to be the phone. A daily phone call can make all the difference.
• Try and continue your previous activities with others outside your home. If you find it is difficult to leave your partner with dementia, try and find someone to be with her while you go out, even if you have to find a paid carer.
  • It is very important for carers to have time out for themselves
  • Claiming Attendance Allowance can help towards the cost of a paid carer – see the benefits question below.
• Finally, make contact with Wendover Dementia Support and come and join us at the Monday Club café. Every week, you will both find a warm welcome, enjoyable company and be part of our supportive group.

Contact us and we will invite you to our weekly Monday Club Café. We are currently supporting more than 40 local people living with dementia and their families, so you will have plenty of opportunity to get to know others. It can be very helpful to hear from others how they have overcome difficulties and it can be inspiring to see people with dementia living with a real sense of wellbeing and contentment.

There are a number of resources on this website that would be useful — websites and books in particular. You could also contact some of the National Charities who may have a service where your mother lives.

In addition, you could check out the County Council website where your mother lives where they often have a list of local organisations for carers and dementia-friendly associations, such as ‘Singing for The Brain’. Your mother’s GP practice may have a Social Prescriber who will know all the local resources.

You need to contact a senior volunteer either by phone, email or at the Café.

Dementia is a general term for a range of diseases that cause changes in the brain that give rise to specific symptoms. There are probably nearly a hundred of these diseases but there are three or four of them that are common. The most common is Alzheimer’s disease, followed by Vascular dementia, Lewy Body dementia and Frontotemporal dementia.

There are common symptoms that include difficulty…

• remembering things
• working things out
• learning anything new
• coping with physical or sensory impairments
• finding their way about and driving

If someone you know has some of these symptoms, it is worth suggesting that they see their GP. Early diagnosis is very important as drugs can be used to slow the development for some people with dementia.

Further information: Types of dementia (Alzheimer’s Society)

Memory loss is one of the first symptoms of dementia, particularly Alzheimer’s disease. Someone may also have difficulty managing everyday tasks and learning anything new. They may say the same things over again, especially questions. More information: Memory loss and dementia (Alzheimer’s Society)

Changes in behaviour. Sometimes this is the first symptom for someone with dementia but, for others, it can come on gradually and even be hard to recognise. More information: How does dementia change a person’s behaviour? (Alzheimer’s Society)

People who are struggling to remember things or undertake everyday tasks can become anxious if they are constantly told they have forgotten something or haven’t done something correctly. Try the following approach:

• Try not to ask them a direct factual question as it can put them on the spot and makes them feel anxious when they can’t remember.
  • For example, don’t ask “how many grandchildren do you have” but rather “we love our children and grandchildren, don’t we?”
  • Usually better to talk about feelings, not facts.
  • Often good to avoid asking how they are and start a conversation by stating how you are feeling instead.
  • If you need to know important things like whether they’ve had breakfast or taken their medication – try using observation first and if you have to, maybe say something like “I had toast for my breakfast. I expect you had some cereal for yours” Any comment that follows that statement will give you a clue.
• Try to avoid correcting them. For example, if they say they have two children when they have three and you correct them, they will be reminded yet again that their memory is poor and it can badly affect their self-esteem.
• Avoid any type of contradiction. Sometimes people with dementia believe they are somewhere else or something else is happening. It is important to accept their reality, enter into it with them and try hard not to contradict them – if that happens they can feel frightened, alone and without support.
  • For example, they may believe they are going to their bridge class rather than the opticians – you will have listened carefully to their comments and realised this, so when you are called into the optician you can say “we are getting our eyesight checked so we can see the cards before we start the first game”. They will go with you happily.
  • Occasionally their reality can be frightening for them but it is still important to go with their reality even though you want to reassure them, For example, they may believe someone is breaking into their house. You long to reassure them and it is very natural to say that that isn’t happening so not to worry. In fact, it may be better to say in a reassuring way “oh yes! We will let them go through and out of the backdoor. Good – they have gone. What about a cuppa?”
• Listen and observe carefully. It is important to listen to everything the person with dementia says and does. These are very important clues to what is currently going through their mind, what they believe is happening and anything that is preoccupying them. That knowledge is important for anyone caring for a person with dementia as then they can acknowledge and share feelings and beliefs. This provides a sense of reassurance, comfort and companionship for the person with dementia and often an explanation for what a person with dementia says or does.

Further information: Practical tips for supporting someone with memory loss (Alzheimer’s Society)
Recommended book: ‘Contented Dementia’ by Oliver James

The days and weeks after someone is diagnosed with dementia can be a difficult time for everyone. People are often given the impression that nothing can be done and there may not even be any follow up appointment. It can be a lonely and worrying time.

• The person with dementia may or may not have understood what was said to them. They may also be distressed by the nature of the questioning process needed for diagnosis which may make them realise the extent of their disability, possibly for the first time. If they have understood the diagnosis, they are likely to be influenced by their experience of dementia in the past. For example, they may have looked after their own parent with dementia and may therefore assume that they will have similar symptoms. They may be worried about being a burden to others and may become anxious. There may also be confusion about the words “Alzheimer’s” and “ Dementia” – with the public often using Alzheimer’s as a kinder word to describe dementia. The word dementia may indicate someone not being in their right mind and if that word is used it may feel harsh. In fact, Alzheimer’s is a specific type of dementia. Types of dementia (Alzheimer’s Society)
• The husband or wife of a person with dementia may feel quite shocked by the diagnosis. While their understanding will also be affected by previous experience and language, they may also feel embarrassed and even ashamed if their spouse shows any symptoms of bewilderment or confusion, particularly in public. They may also worry about whether they have the capability to care for their spouse with dementia and be concerned whether they have the patience or compassion for the role. Their life has been turned upside down and it may take them some time to come to terms with it – they may feel ashamed or resentful.
• The rest of the family may take some time for the implications of the diagnosis to sink in and understand how much both their parents need their support – both practical and emotional. The more everyone in the family can talk and share their feelings the better and improving the frequency and quality of communication and support within the family from the start can make a great deal of difference.
• Practical steps:
  • Power of Attorney for both Finance and Health and Welfare should be applied for as soon as possible – see the PoA question below. If the person with dementia is reluctant, then get both parents to apply together. At the same time, it can help to review their Will and make any advanced statement of what they would wish to happen if they no longer had mental capacity. Lasting power of attorney for people with dementia (Alzheimer’s Society)
  • Apply for benefits now – particularly Attendance Allowance and reduction in council tax. Even if no money is needed to pay for care now, the money can be kept for use in the future. Benefits for people affected by dementia (Alzheimer’s Society)
  • Encourage independence, activities, hobbies and exercise outside. There is a large range of equipment and gadgets all designed to act as prompts to keep someone independent for as long as possible. There are usually ways to be found to enable someone just diagnosed with dementia to continue with activities that give them pleasure – even if friends are recruited to do things with them in order to provide prompts if necessary and keep them safe.
  • Encourage the husband and wife of the person with dementia to continue with their own hobbies and activities – if necessary making arrangements to keep their spouse occupied and safe while they are away.
  • Look at our section on resources – reading recommended books can not only help with vital information but will also give you hope and encouragement.
  • Finally, contact us and arrange for a home visit and attendance at the Monday Club Café. The sooner you come to us the better. And if you are a son or daughter, don’t forget to get involved with our Family Support Group

There are a number of things to consider.

• Do you think he may be no longer safe to live alone? You could consider live-in care or residential care.
• Try and organise more activities for him during the day, particularly involving physical exercise outside. This will help him sleep at night.
• Being up during the night and sometimes sleeping in the day is quite common for people with dementia particularly if they live alone and are therefore not prompted to go to bed.
• Consider asking your GP to refer you for an Occupational Therapy assessment.
• In the meantime, here are a few things that might make a difference:
  • Provide a 24hr date clock that makes it clear when it is day and when it is night.
    1. A child’s sleep training clock glows a different colour when they are supposed to be asleep.
    2. Rosebud Dementia Reminder Clock can be programmed to provide prompts that encourage a sense of routine around night and day. It can also provide reminders to take medication or have a meal. (It is supplied by NRSHealthcare but maybe cheaper at Argos.)
  • Put written messages by the front door such as “DO NOT GO OUT IF IT IS DARK”.
  • It may be possible to always ring him at a certain time to prompt him to get ready for bed.
  • It is sometimes possible to time the closure of curtains electronically to indicate that it is evening and prevent disturbing reflections in the window – programmable electric curtain tracks are available.
  • You could use a baby monitor with video that can be set up in his bedroom so you can check on him but the range may be a problem unless you are in the same house. However, if he has Wifi you can use a Smart Wifi monitor that is not constrained by signal range and will show on your mobile phone anywhere. They can also be compatible with Alexa or Echo Show.
  • You can get a tracker for your father which will show you via GPS on your phone where he is.
    1. Pendant Micro Tracker (Micro GPS tracker)
    2. Trackers fitted in shoes (GPS SmartSole)
    3. Smartwatch – CPR Guardian Personal Alarm Watch which has...
       • Fall detection
       • Outdoor GPS location tracking
       • Two-way phone calling
       • Heart rate monitoring
       • Family can monitor on their own mobile phone using an App and are able to voice call the watch if necessary.
  • Try and ensure that he has something on him which tells anyone that finds him that he has dementia and provides his name, address and an emergency contact number…
    1. Written information in his pocket/wallet etc or sewn onto clothing
    2. ‘I have dementia’ badge
    3. Medical ID bracelets
  • Register him with the police using their Herbert protocol. The Herbert Protocol is a form that carers, family or friends of a vulnerable person, or the person themselves can fill in. It contains a list of information to help the police if the person goes missing, including: (1) medication required, (2) mobile numbers, (3) places previously located and (4) a recent photograph.
  • It is also possible to put a tracker on his set of keys so they can be found if he loses them (keystracker).

People with dementia may not retain the answers to a question, nor do they remember that they asked the same question already 20 times. However often if someone is constantly asking the same question they may be after an emotional response rather than a factual one. They may just be asking for comfort, reassurance or to feel included. This can be a major cause of stress and irritation to carers, particularly husbands and wives who live with it constantly. However, some understanding of why it happens can help them understand and begin to get used to it.

• For example, when on a journey in the car, the person with dementia may ask repeatedly where they are going. When told that they are going to their sister’s house they keep asking the same question over and over again. What they may be actually wanting to communicate is their distress at leaving their familiar surroundings, their confusion about why they are going, what will be expected of them and who will be there. So maybe a more helpful reassuring response is to say “we are going to your sister Eileen. It’s her birthday so we are going to wish her a happy birthday. She will be on her own but will be so happy to see us. I am looking forward to it and I will be with you all the time. We will go together and I will take you back to your own home soon”. But be prepared to repeat it several times.
• Another example: a person with dementia may constantly ask where someone is. They keep repeating this despite an acceptable explanation. What they are really saying is that they don’t really feel secure without them there. It might be worth trying a number of different explanations and choosing the one that makes them feel most secure. For example, saying his wife has gone shopping may still make him anxious but saying she is in the shower might help him to feel more secure.

Further information: Repetitive behaviour and dementia (Alzheimer’s Society).

Most people living with dementia require some paid help at some point. While some people with dementia require carers to fulfil a traditional role e.g helping with washing, dressing and taking medication, many people with dementia are capable of doing things for themselves but need a ‘companionship carer’ or ‘personal assistant’ instead.

These carers, usually dementia trained, assist people with dementia to do things that they can no longer do without someone there to prompt them. For example, they may take the person out for a walk, go for a coffee or take them for a trip in their car. They may also help the person with dementia to undertake tasks such as cooking, sweeping up leaves or sitting with them doing a jigsaw or reading the paper. Some companionship carers also take charge of medication, shopping and correspondence, particularly for a person with dementia living alone.

So the first thing to decide is what a paid carer is going to be required to do and what the purpose is. Is it to give the husband and wife a bit of respite during the week, allow the person with dementia to take exercise safely or to give them some enjoyment, stimulation and sense of achievement? Of course, it is perfectly possible to do all three.

If you are considering taking this step, there are a few things to consider.

• How to find the right person
  • There may be a process of trial and error before the right person is found.
  • First, make sure you are receiving any benefits. Benefits for people affected by dementia (Alzheimer’s Society)
  • If you are funding this carer yourself you have two choices…
    1. A self-employed carer found through an advertisement or recommendation.
       • Pros
         • May come highly recommended by people whose opinion you trust
         • If they live close by, their hours and services might be flexible
         • They may be more acceptable to the person with dementia.
       • Cons
         • They may not be dementia trained so may not communicate in a way that reassures and promotes wellbeing
         • They do not have an agency behind them to give cover if they are ill or on holiday
         • You may have employment responsibilities such as paying towards their pension
         • They may not be insured.
    2. Use an agency to find the right carer. The manager will usually come out and assess your needs initially and then try and match your requirements with a suitable carer.
       • Pros
         • Carers should be trained in dementia
         • There may a choice of carer
         • There is someone there at the agency to talk to if the carer turns out to be unsuitable
         • The agency will replace an unsuitable carer or a carer away on holiday or sick
         • The agency will ensure DBS checks, vaccinations, health and safety, etc.
         • They will be insured.
       • Cons
         • Hours may not be flexible
         • Some agencies are finding it difficult to recruit staff.
  • If you want this to be provided by Social Services you will need to get a Social Services Assessment that will include a financial assessment – see ‘How to pay for it’ ( below).
• How to make it acceptable to the person with dementia
  • This will obviously depend on the attitude of the person with dementia but it is always worth planning this introduction of carer carefully.
  • In our experience, it is best for the whole family to think of the most acceptable explanation to give to the person with dementia. Here are a few that have worked:
    • “This person has come so you can show them your walk to the canal – maybe you could give them a coffee on your return.”
    • “ you have said that you would like to sweep up the leaves. Carol has come so you can show her how you do it.”
    • “ This friend of ours has come so you can show her how you make a Victoria sponge.”
    • “ I am feeling tired so this person has come to help us get things done.”
    • “ Sue has come to play dominoes with us – we thought you could show her what to do.”
  • It is usually better to avoid using the word ‘carer’ or even to say it is to give the husband or wife a break.
  • Sometimes it is best not to suggest that this is a paid service.
  • It is worth the carer being fully briefed and prepared before the first session when they meet the person with dementia for the first time, particularly if any difficulties are anticipated. WDS can help with this.
• How to pay for it: see How is care paid for? What can I expect?

It is best to claim for all benefits as soon as possible. There are two benefits you can claim on behalf of someone with a diagnosis of dementia that are not means-tested – Attendance Allowance and a reduction in Council Tax.

If your situation is complicated, or you think you may be eligible for other benefits because you are on a low income, it is best to get specific advice from Citizens Advice or the online benefits calculator.

Further information: Getting financial help and support (Dementia UK)

It is never too soon to look at the finances and plan for the future if you are caring for someone with dementia.

• As a general rule, people living in England have to pay for care themselves if they have a capital of over £23,250. If the care is to help someone stay in their own home or they share the house with their husband or wife, the value of their home is not taken into account. If this applies to you, you are known as a self-funder.
• Care that is provided in an emergency, such as urgent respite care or after hospital discharge when using the Reablement service, is often provided without charge.
• If a person with dementia requires constant nursing care they may be eligible for Continuing Healthcare Funding. Contact the Complex Care Team at Westongrove in the first instance. What is NHS continuing healthcare? (Alzheimer's Society)
• Planning for care at home, respite care or permanent residential care.
  • Even if you consider yourself a self-funder, consider organising a Care Needs Assessment from your local Adult Social Care department of Bucks County Council.
  • What is a Care Needs Assessment?
    • Everyone with a diagnosis of dementia is entitled to a Social Service Care Needs Assessment even if they think it is likely that they will be self-funding any care. However, you may have to wait some months as there is pressure on the service.
    • If you think you will be self-funding, it might be worth organising the care yourself if you do not want a delay
    • It is best not to delay asking for a Care Needs Assessment.
    • More information about a Care Needs Assessment can be found at The Care Needs Assessment Explained (Age UK)
  • Paying for homecare
    • More information: Paying for care at home (Age UK)
  • Paying for permanent residential care
    • More information: Paying for residential care (Age UK)

It is recommended that all older people have a Power of Attorney in place. This ensures that they have designated someone they trust to make decisions on their behalf if they are no longer able to do so. If your mother has a diagnosis of dementia, it is more likely that at some point in the future she will be incapable of making decisions for herself so having a Power of Attorney in place becomes important. Your mother is only able to organise a Power of Attorney if she is currently judged to have mental capacity. It is therefore never too soon to organise Power of Attorney but it can be too late – if someone is judged not to have mental capacity then a Power of Attorney is not possible and someone may have to apply to the Court of Protection for a deputy instead. This is a more complicated and expensive procedure and your mother cannot choose who she wants to be her deputy.

A Lasting Power of Attorney (LPA) enables a person to appoint someone they trust to make decisions for them in future if they can’t make a certain decision or decisions for themselves. The person (or people) they appoint will become their ‘attorney’.

The two types of LPA are:

• LPA for property and financial affairs – this gives the attorney or attorneys the power to make decisions about things like selling the person’s house or managing their bank account.
• LPA for health and welfare – this gives the attorney or attorneys the power to make decisions about the person’s health and personal welfare, such as day-to-day care, medical treatment, or decisions about where they might live so that they can receive care and support, such as a care home.

To make an LPA, a person needs to fill in a specific application form. This form needs to be signed and witnessed by various people before it is registered with the Office of the Public Guardian.

An LPA must be registered before it can be used. There are two types of LPA. They each relate to different decisions. A person can have both types of LPA, but to do this they will need to complete both forms. It is possible to complete the forms online, get them signed by the appropriate people and register them with the Office of the Public Guardian – Make, register or end a lasting power of attorney (GOV.UK). However, these are legal documents and it can be advisable to get help from a solicitor or other agencies.

Further information: Lasting power of attorney for people with dementia (Alzheimer's Society)