Common questions we get asked
Dementia affects each family differently, but we find that there are some common questions that we get asked about more frequently on our Admiral Nursing Direct helpline. We’ve shared some anonymised questions and answers below in the hope that these will be useful to other families living with the everyday reality of dementia.
Our Admiral Nurses are experts in dementia care and are available every day of the week. Call 0800 888 6678 or email firstname.lastname@example.org.
Encouraging an unwilling person to get a diagnosis
I’m worried that my husband has dementia but he’s refusing to see our GP as he doesn’t believe that there is anything wrong with him. What should I do?
If your husband is reluctant to see his GP, you could suggest you both go together for a NHS Health Check, or ask him to go with you, as you would like some support. GPs are unable to talk to you about your husband’s condition without his consent, but if you write a brief letter setting out your concerns before the appointment the GP will be able to consider your concerns and plan an assessment accordingly.
Encouraging a diagnosis without a cure
My mum is finding day-to-day tasks more difficult and her memory is quite poor. I believe she has dementia but what’s the point of her going to her GP to confirm this if there is no cure?
Even though there is no cure, getting a diagnosis as soon as possible ensures that the appropriate advice, support, and treatment can be given to your Mum.
Also medication can be prescribed to help to manage her condition. For example, two-thirds of people with Alzheimer’s disease can take medication to slow the condition down; and there is medication available for all types of dementia to help alleviate symptoms or slow the progression. A GP can also provide advice and information on support groups, lifestyle, health and social care support for your Mum. A diagnosis will also help you, your Mum and the rest of your family to put the necessary care plans and financial and legal documentation in place.
For many people, it can also be a relief to know what their condition is and it can help the whole family to better understand what it happening. A diagnosis encourages a family to increase their knowledge of dementia, which helps the person with dementia to stay well for longer and improves everyone’s quality of life.
How to get a diagnosis
My wife is having problems with her memory, frequently repeats herself, and has lost weight. I believe she has dementia but how do I get a diagnosis to confirm this?
Your wife will need to attend an appointment with her GP to commence the process of getting a diagnosis.
The GP will request blood tests and check your wife’s weight and blood pressure. Some physical conditions if left undiagnosed such as anaemia, thyroid problems, diabetes, vascular problems related to circulatory issues, vitamin B12 deficiency, depression and/or anxiety, can severely impact on someone’s concentration, memory, physical and emotional well-being.
If after running tests her GP rules out other physical conditions that could be affecting her memory they will then start investigations to see if she has dementia. Her GP will take a medical and family history and test her mental abilities by asking questions, to test her concentration and short term memory. This is known as cognitive testing.
The GP may then request an MRI scan or CT to examine the structure of her brain, or request a chest x-ray to check for any chest conditions. They may also refer her to other health or social care professionals such as a Memory Service/ Clinic or to a specialist for further investigation and assessment. If the results of the tests indicate that she has a diagnosis of dementia, then her GP should refer both of you to other health or social care professionals, such as a Psychiatrist, Admiral Nurse, Neurologist, Community Mental Health team, Psychologist, or Social Services for further assessment, treatment, specialist advice and support.
My husband has been referred by his GP to a memory service to find out whether he has dementia or not. What is a memory service and what happens when you are there?
Memory services (sometimes known as memory clinics) are operated by medical staff, specialist dementia nurses, psychologists, and occupational therapists. The team at the memory service runs comprehensive cognitive assessments on people of any age who have or are suspected to have memory problems, to determine whether they should be diagnosed with dementia or not.
Once a diagnosis is given the service provides ongoing support and information to people with memory problems and their carers. This ranges from helping to support individuals and their carers to come to terms with the diagnosis, through to helping them cope with stress, anxiety, anger, and the feeling of isolation. The team at the memory service will also provide useful coping strategies and treatments to help people minimise their memory difficulties so they can live independently and safely.
Following a consultation with your husband, your GP will have identified that your husband is experiencing memory issues that maybe caused by the onset of dementia. When your husband attends the memory service, the team will run a number of assessments to test his memory and patterns of behaviour to determine whether he has dementia. You will be able to accompany him to the appointment but his tests will be carried out on his own. Plus, the appointment letter should inform you of how long the assessment will take and what the process will be.
The Memory Service will inform your GP of the assessment results and your GP will ask your husband (and you) to attend a follow-up appointment to discuss the results. Your husband will receive a diagnosis of dementia, or will be referred for further investigation, which may entail having an x-ray or MRI scan of his head to look at the structure of his brain.
What to do post diagnosis
My Dad has just been diagnosed with vascular dementia. What can I do to give him and my Mum the help and support that they will need?
Following your Dad’s diagnosis your mum and dad should have received information from their GP and been advised on what support is available to them in their local area. It is worth checking with your mum whether your dad has been referred to any health care specialists or if she received any advice and information from their GP. If you speak to their local council and health and social services, they should be able to advise on the care and financial benefits that both your mum and dad are entitled to. There should be a local support group or memory café they can attend or a day care centre your Dad can attend to give your Mum some respite.
It would be beneficial for all three of you to discuss together: the type of care and support they would like to receive; their finances and how best to manage these moving forwards; and legal documentation like putting in place for your father an enduring or lasting power of attorney and a living will. A power of attorney is a legal document that lets you appoint one or more people to help you make decisions or make decisions on your behalf; and a living will is where you express your wishes about how you want to be treated and cared for in certain situations, in case you lack capacity to make or communicate your decisions at the time. By encouraging an open discussion, understanding the type of care and support they would like, and forward planning, you will be in a position to help and support them. This Information Sheet will also help you with guidance or contact our Admiral Nursing Direct helpline.
Referral and diagnosis issues
I’m convinced my father has dementia. I accompanied him to a GP appointment to discuss the symptoms he is experiencing like forgetfulness, memory loss, mood swings and problems with coordination. The GP says Dad doesn’t have dementia and the GP won’t refer him to be tested at a memory clinic. What can I do next?
Your Dad’s GP is like the gatekeeper – they are the only person who can provide a diagnosis or make a referral to a memory service so they can run more tests to provide a diagnosis. You can speak to your Dad’s GP surgery and make an appointment with another GP to see if they can help further. If this doesn’t work, then you can consider moving your Dad to another GP surgery so he has a new GP who can assess the symptoms he is experiencing.
My mum has just received a diagnosis of dementia. How do we tell family and friends? Should we be talking to Mum about her diagnosis or will it upset her?
Your Mum may well know that something is wrong and may be worried about the changes that she is noticing in herself. It is important that once a diagnosis is reached she has the opportunity to discuss the diagnosis, what it means, what the future might hold and the types of support she might need. (She should be informed of the diagnosis, ideally when a family member or close friend is present, by the professional who has completed the assessment, or the professional who knows her best.)
Time should be given to your Mum and your family to process what it means, and you should be encouraged and allowed to ask questions. This could be at the time of diagnosis or as soon as possible after this. It is a good idea to tell close family and friends about the diagnosis, so they are aware, can offer advice and support as needed and understand why these changes are happening. Some people (especially when the person with dementia lives alone) inform a close neighbour or friend so that they are aware and can provide some support as and when needed.
Talking to young children about dementia can be difficult. However, children are normally very aware that something is wrong and are normally able to accept the diagnosis for what it is, and not let it affect their relationship with the person with dementia. Family, friends and the local community may have difficulties coming to terms with the changes in the person diagnosed with dementia and helplines such as Admiral Nursing Direct can give tailored specialist advice and support to help maintain relationships.
Being ‘in it’ together
How do I get my relative who has dementia to agree with what I know will be good for them (e.g. going to the day centre)?
Try to introduce things gradually and as sensitively as possible. Sometimes people with dementia say no to things because it is so daunting to start something new. This is a feeling we all get when we join a new group where we do not know anybody. You can try and go with the person for the first time and stay for a little while. If you are unable to go with them, arrange for someone to pick them up. Some day care facilities have a mini bus or taxi scheme, or you could ask social services to provide some help on those days.
If the help is in the person’s home, giving the helper a different name other than a ‘carer’ may help. Most providers are very used to being called something else like a ‘friend’ (maybe of yours), a companion, a secretary or something else that is meaningful to the person with dementia. If you still have problems try the ‘in it together’ approach, for example, ‘I really need some help with my housework shall we share the same person?’ or ‘it would really help me if someone could call to check you are ok over the next few months as it is winter/ I will be on holiday and I will worry’. Although it can be very frustrating, try not to judge or challenge the person. Sometimes it can be better to arrange for someone to call and introduce themselves saying that they know you.
Always use a regulated provider to ensure the helper is trained and Disclosure and Barring Service (DBS) checked. It is wise to request a Community Care Assessment from the local Social Services before you introduce any help into person’s home.
Managing financial, health and legal affairs
My father is very confused and not managing his affairs very well. What can I do?
If your father has not seen a doctor about his confusion get him to see his GP as soon as possible. It is important to have a health check as the confusion may be caused by a physical illness that requires treating like an infection, pain or a chronic illness that is not well controlled.
Finances can be tricky to manage if you have memory problems. To protect him you need to get a Financial Lasting Power of Attorney in place as soon as you can. You do not necessarily have to fully implement it straight away but it gives everyone protection. Setting up Direct Debits to pay the bills will relieve some of the household management stress. You can put a limit on how much cash can be taken out at any one time by speaking to the bank and make sure only the amount necessary for a few weeks or a month is in the Current Account.
A Health and Welfare Lasting Power of Attorney will enable you to speak to doctors and social services on his behalf and receive letters about appointments and reports about his care and health. This is very useful to prevent missing appointments and treatments.
Set up a postal and phone preference system to reduce the likelihood of unwanted mail or phone calls. If you father uses a computer ensure you know the passwords so you can access bank accounts and online payments etc.
You can purchase mobile phones with larger numbers and buttons; ensure an emergency contact number is on the phone in case of emergency. You can also purchase ID bracelets and necklaces so that you can be contacted in case of emergency.
Accepting help at home
My mother has recently been assessed by social services for help at home. She is ‘self-funding’. We have been sent some information but I really don’t know where to start especially as she keeps saying she doesn’t need any help.
Starting with some gentle ‘companionship care’ is often much more acceptable than having a ‘carer’ call. There are a variety of providers of this type of care and they can be very creative about how they enable the person to accept care.
Most providers will be very receptive to an exploratory phone call to talk about your mother’s needs, and will use agreed words and language when they make the assessment visit.
The help may start with just a cup of tea or a walk outside, and progress over a few weeks as the relationship builds with the service. It is always best to start gently if your mother feels she doesn’t need any help. Some people find going out to a day centre or a social activity more acceptable.
When looking for a care provider make sure they are regulated by the Care Quality Commission (CQC), that they train their staff in dementia care, and they employ their own staff rather than being an introductory agency.
Paying for care at home
How can I get some help to pay for my father’s care? My mother does everything and she is worn out I am so worried she will completely break down.
Making the decision to get help is very personal, and it can seem like your mother who is caring is in denial, or being very stoical. It can feel very intrusive having various people come into your house and take over different aspects of care, or day-to-day household tasks. This therefore makes the decision-making of ‘the right time’ very difficult.
Your father is entitled to a Community Care Assessment and a Financial Assessment from Social Services. During the assessment they will assess his care needs and offer a ‘care package’. You can accept the ‘care package’ which is often a few visits a week for about 45minutes – 1 hour at a time. This means the money to cover the package of care will be paid to a designated person (usually to the Power of Attorney), and can be used to purchase the care and help the person needs in a very flexible way.
Alternatively your mother can ask for a ‘Carers assessment of need’ as she is entitled to this under the Care Act 2014. Help or some money should be available to enable her to have a break of at least a few hours a week.
In addition your mother is entitled to Attendance Allowance and as she lives with your father she can claim a 25% council tax reduction for Mental Incapacity
Find out more about sources of support for families affected by dementia, including about Financial Assessments, Attendance Allowance and Power of Attorney.
Personal care and hygiene
My husband used to be so smartly dressed and take detailed care of his appearance and personal care. Now he doesn’t care any more and won’t let me help him. At the moment he has between three and four layers of clothes on and won’t change into his night clothes. He last showered three months ago. What can I do? I am so worried, as he smells and his skin may be sore?
As the condition progresses it can be very difficult to reason with the person diagnosed with dementia about the need to wash, change clothes or self care. If you see this from the perspective of the person living with dementia, when this is pointed out, it can feel like an attack or a judgement on their very personal space, and can lead to arguments and the person becoming even more resistant to help.
Try not to ask you husband questions about his personal care. Instead write down your routine and look to see if you can ask him for help during your personal care regime. For example, if you put on make up or do your hair in the morning, ask him if he will shower whilst you are doing this so you can chat to him. Or even if you don’t need help, ask him for help with buttons, turning the shower on, or choosing shower gel. Ask him what you should wear and then reciprocate with him (keep choices to two).
If this just doesn’t work then it may be time for some help. Sometimes a professional carer coming in can be more acceptable for the person living with dementia than a family member helping with personal care. This is because most of us are very private people and can be embarrassed and upset having a family member doing these ‘tasks’ for us.
A regular trip to the hairdressers/barbers may also help. Sometimes the person just needs a prompt like clean clothes laid out. If this works, do ensure you remove the dirty ones as soon as you can.
Using statements that are very obvious for example, ‘gosh I am sticky I am going to shower’, or ‘this shirt needs a wash I am going to change’ can also help. If at all possible, try to establish a routine regarding personal hygiene e.g. a morning (or evening) bath or shower with fresh clothes laid out and worn clothing removed for washing.
Managing disrupted sleep
My husband sleeps all day, and then he is up walking around all night. What can I do?
Disrupted sleep or change in sleep pattern is fairly common, however, a regular sleep pattern is essential for your husband, and for you. As with meal times, try to keep a regular sleep routine; the same time to bed at night, and the same time getting up each day.
Try to discourage day-time naps. One hour during the day after lunch is fine, but longer naps may affect night sleep.
By keeping your husband occupied during the day, it may help him sleep better at night. Some suggestions include: helping with housework, walks in a park, social activities, exercise (even simple arm or leg exercise whilst sitting), attending clubs, outings, watching a video, looking at old photographs, and spending time with friends and relatives.
Spending time in natural sunlight, especially in the morning, helps to balance our sleep pattern (our body-clock). And as bedtime approaches, dim the house lights, keep the surroundings calm, and avoid giving caffeine (coffee, tea, certain fizzy drinks) after 2pm in the afternoon.
If your husband is walking around at night, be aware of hazards and safety, e.g. trip hazards, trying to use the cooker or kettle, leaving the house and walking outside. Use nightlights to help with finding the toilet, but aim to keep bedrooms dark, and the room temperature on the cool side.
Someone diagnosed with dementia can become increasingly restless, confused, agitated, or distressed, particularly as the sun is setting and it becomes dark outside. This is known as ‘sundowning’. It can happen at different times of the day too, and is distressing for the person as usually they are trying to get home, to pick the children up or some other task, and getting frustrated when they can’t do so.
Discuss with the GP if you notice your husband has breathing difficulty or stops breathing for short periods during sleep (this is called ‘sleep apnoea’, and it can disturb the quality of sleep they have).
It is very important that you get enough sleep yourself. Please discuss concerns with the GP so that you can both work towards getting quality sleep.
Getting enough to eat and drink
How can I be sure that my wife, who has dementia, has enough to eat and drink?
Mealtimes are important and enjoyable times of the day for us all. Try to keep to regular meal times and eat together if possible. Having a regular routine helps. Prevent distractions at mealtimes, and keep the surroundings calm.
Check food likes and dislikes, as preferences can change over time, for instance, someone who used to prefer savoury foods may now only want to eat sweet things.
People living with dementia can sometimes forget to eat or drink throughout the day, or in the later stages forget how to prepare food and drinks.
If your wife has lost the ability to feed herself, or if she is forgetful, she will need your encouragement, guidance or help. Encourage independence as much as possible, and give assistance if accepted and if necessary.
If your wife is restless and won’t sit to eat, try offering foods that are easy to hold and eat on the go (sandwiches, fresh fruit, biscuits).
Ensure that there are no physical issues preventing your wife from eating or drinking, for example, e.g. ill-fitting dentures, pain, chewing or swallowing difficulties.
Discuss any concerns you have with the GP.
If you are concerned, discrete supervision around mealtimes will help you to understand how much is being eaten. Keep a record of your wife’s diet and fluid intake, and also her weight or appetite changes. This information could be shared with the GP if you have serious concerns, or if there is a substantial weight loss.
Getting out and about
How can I make going out to the shops with my husband easier?
The home is our place of safety, quiet, calm and familiarity. Going out can present many challenges.
Noise, especially in busy areas, can be difficult to focus on and process, so, when going out choose a quieter time, avoid peak times and areas with loud music where possible.
Go to shops that are dementia friendly as they will have an awareness and understanding of how to make the shopping experience more pleasurable for people living with dementia. Have regular stops to avoid fatigue, going to coffee shops can make it feel like a more social activity as well as keeping hydration levels topped up. If your husband is agreeable, link arms to help offer safety and support, keep smiling as a happy face can make someone feel safer and more relaxed.
Social anxiety and isolation
My mum has a diagnosis of vascular dementia. She lives alone and has always been very sociable. Over the last year she has gradually stopped going out and often spends the day in bed. I am worried that she is becoming isolated as this week she refused to come to our house for lunch.
People with vascular dementia often have some days that are better than others. Sometimes there can be a temporary disruption in the blood supply to part of the brain (‘transient ischaemic attack’- TIA) and this can make the person drowsy. People with vascular dementia are also at a higher risk of depression, which could also be the reason for the behaviour you are describing.
Either way, your mum may need a little bit of help with a befriending service, companionship care or a structured dementia activity like singing for the brain or a dementia cafe. These activities and help will be pitched at a level she can cope with, and be facilitated by people who understand her vascular dementia.
When you invite your mum to do something with you and your family, just let her know a very short while before the event. This will help prevent her getting worried about what she is going to be doing and how she is going to cope. When you arrive to take her out, use statements like ‘time to leave mum, I am just getting my coat’ and keep questions and choices to the minimum. Never ask her if ‘she remembers’ as this can make her defensive and she may well then reject your offer of going out.
Managing memory loss
My wife’s memory loss is getting worse. Is there anything I can ￼do?
Understanding a little about the type of dementia your wife has will help to support her with day to day living with memory loss and maintain her emotional well-being. Reliable sources for finding out more about dementia are your local carers’ groups, the library (all libraries now stock books about dementia and books for people with dementia) and the NHS Choices website.
Once you understand about the type of dementia your wife has you can try out some strategies to support her:
- Labelling cupboard doors with written labels or pictures can help in areas like the kitchen. Coloured stickers can help with on and off switches.
- A diary that you can both check daily can help with appointments and socialising (a large desk diary is usually the best type).
- Putting medication in daily trays or in a special container, such as a Dosette box, to help remember to take them on the right day and at the right time. This can encourage independence when taking tablets and help to prevent mistakes.
- Laying out clean clothes each evening and removing the ones that need washing can help with dignity and cleanliness.
Try not to ask her too many questions, as your wife can feel overwhelmed. Instead make statements like, ‘it is time for a cup of tea I am going to put the kettle on’ or, ‘I have turned the shower on for you’. Try not to judge – sometimes it takes a few moments to gather your thoughts when you have memory loss, and you can easily be left behind if too much information is given at once – keep things simple, speak slowly and clearly.
Try and keep your wife as active as possible with plenty of exercise and stimulation. You can do things together like:
- Sharing an interesting story in the newspaper – read them out to each other.
- Play number and word games like dominos, cards, crosswords and jigsaw puzzles. If these are too difficult, use pictures or photographs to share stories from the past – she will be able to remember a lot of detail about her earlier life so write some of the details down so they can be shared with others. Use prompts like ‘tell me the story when you …’
- If following TV is getting difficult try pre-recording some of your favourite programmes or buying some DVDs. Choose things that are not too complicated or too long.
- Music can be calming and enjoyable as it does not involve too much information – you could put a play list of favourite music together. Some people find wearing head phones helps them concentrate and relax.
What to do if a family member doesn’t recognise you
Handling repetitive phone calls
My relative keeps phoning me at all times of the day and night asking to go home. I tell them they are at home and they are all right for a while, and then they phone me again – sometimes up to 30 times a day. The repetition of the calls is really difficult to deal with. What should I be saying to them?
Wanting to go home is a common request that people with dementia make. There are various reasons for this: sometimes it is because they feel unsafe or insecure, especially if they are on their own, or sometimes it is because they no longer recognise their surroundings.
This could be a sign that your relative needs more help at home, or a move to group living in a care home setting. Being with others in a supported environment can help with feelings of loneliness and help your relative to feel secure. For other some people, regular help at home or live in care at home can help, as there is someone to check things with and to support them with day to day activities.
It can also be helpful to talk to your relative about their childhood home as this is often the ‘home’ people with dementia are referring to. Looking at photos and talking about their past life can help them. Try to talk about that home in the past tense rather than saying she doesn’t live there any more, as in their world they may be feeling this is where they are.
Using medication to deal with aggression
My wife has Alzheimer’s disease and has been shouting at me, and went to strike me last week. We went to see the doctor as I thought she may have an infection. The doctor said there was no infection and has prescribed anti-psychotic medication. I am really worried about this. Should I give them to her?
Checking for an infection when a person’s behaviour changes is absolutely the right thing to do. Infection can be a cause for increased confusion, disorientation and agitation.
You don’t mention if the doctor GP checked with you about when your wife was shouting at you, or why she went to strike you. Writing down what happened and what was said can be helpful in this situation as she may have felt frightened or have not understood fully what you were trying to do.
Looking for ‘triggers’ to the behaviour may help you understand things from her point of view, so that you can change how you communicate with her or change the routine or a task to help her keep pace with you and understand what is expected of her.
You might be tired or getting frustrated and may need a break yourself (respite) or some extra support. Your wife will be able to sense when you are tired and upset and she will have a tendency to mirror your emotions. It sounds like it is a stressful time for you both, you may like to seek some counselling to help regain some control over the situation.
Anti-psychotic medication can be helpful when the person with dementia has false beliefs or hallucinations which are making them distressed, angry or aggressive. The medication should only be given in very small doses, for a short space of time, and be carefully monitored by the prescribing GP on a regular basis. If you remain concerned go back to the GP and talk about this.
Dealing with delirium
Over the last week, my mother suddenly started to see things that aren’t real (hallucinate). She is distressed, refusing to eat and drink, and has become restless. She has changed so much in a short space of time. What is happening?
Any sudden deterioration or change in someone’s behaviour or functioning, is likely to be caused by an acute physical illness of their body or brain. If you notice a change to the person’s usual behaviour over the course of hours or days, this is known as a ‘Delirium’.
Symptoms can vary. They include visual hallucinations, restlessness, increased confusion, aggressiveness, agitation, change in walking or moving. Or the person may become unusually withdrawn, sleepy or quiet.
The main thing to look out for is a ‘sudden’ change in how they usually are. Causes can include infection, dehydration, underlying disease and constipation. Your mother needs to see a GP or a medical professional straight away.
Delirium needs urgent medical attention, and it is seen as a medical emergency. It is a common condition, but must be treated in a timely way by treating the acute physical illness which if an infection, could be by antibiotics.
We have been managing quite well to keep my uncle at home but over the last few months he has become incontinent. He denies the wet underwear and urine soaked bathroom floor is anything to do with him. I don’t think he can stay in his own home any longer as he lives alone and already has three visits a day by a care agency to help him. What can I do?
Arrange a check up with the GP to make sure your uncle has not got a urine infection, constipation or other underlying cause to his incontinence and if so, these can be treated.
Check whether your uncle knows where the toilet is, as sometimes unless the person can clearly see where it is, they will not use it. Use large signs for the toilet,- pictorial ones are better, and leave the toilet door open if possible so it can be clearly seen.
He will need to have an incontinence assessment (which will be arranged by the GP surgery) and he will then be supplied with incontinence pants or pads. It is better for people diagnosed with dementia to have pull-up pants to enable independence. You can also purchase covers for the bed and chairs called ‘kylie sheets’, which are washable and come in a variety of colours and sizes.
Your uncle may need reminding to go to the toilet regularly throughout the day, so check with the visiting carers that they are prompting him and checking if he needs help with changing his clothes.
If you feel it is time to step up the care, start making some plans by looking at local care homes, and the alternative which is 24 hour live in care. Your uncle’s local adult social services department can help with advice about this choice and the funding options available.
Moving into long-term care
My parent needs to move into long-term care – what should I think about?
Request a Community Care Assessment from the local Adult Social Services. They will then be able to advise on finances and what sort of home to look for. It is advisable for you to look at the homes first without your parent; but take a friend or relative to get a second opinion and for support as it can be very emotional. Try and visit at least three and take a check list with you. For example: do they have rooms with a garden view, is there an outside space that is accessible, do they cook the food on site, what sort of activities do they have and how often? When making the visits make the first one by appointment so you can meet the manager and senior staff. If you think it might be the right one go back unannounced at a lunchtime or busy period to see how the day maps out. Speak to some of the residents and other visitors to see what they think. When you have found the right home and there is a bed, if possible take your parent for a visit – a coffee or lunch so they can see it. You might go a few times to help them get used to the building.
Now think about you. How accessible is the home from you, do you need some extra support over the next few months, especially if you have to close down a family home and put it up for sale? This can be very emotional and draining if there are a lot of possessions to sort out. Get some independent financial advice regarding the sale of the property to assist you with investing the money to pay the monthly bills at the care home. Talk to the home about setting up a Direct Debit and if your parent will need some cash for activities, hairdressing and chiropody, and make the appropriate arrangements. Your parent will need to have their clothes labelled – ask if the home can help with this or give yourself time to complete this task as it can be lengthy. Do not feel you have to visit every day. Give your parent time to settle in and make new relationships and friends in their new living environment.
Set out to work in partnership with the staff at the care home. It is really helpful for the care home to have some photos and a written time line, or life history, about your parent. If they particularly dislike something, and love something else, make sure they know. Most homes encourage some furniture and ornaments etc. from home. Ask if you can prepare the room before your parent goes to live there so things look familiar. Ask to see the care plan and spend some time reading it so you can add things or discuss treatments and care with the staff. Make sure the care home know about any hospital appointments, anniversaries, birthdays etc. that are important to your parent.
Preparing for a hospital visit
My mum is going into hospital. What do I need to prepare?
An overnight bag is one of the first things that you’ll need to consider. It should include: toiletries, towel, extra pyjamas and nightwear, dressing gown day wear; and a ‘This is Me’ or brief list of usual routine, likes and dislikes if your mum isn’t able to express these. All clothing should be labelled and it’s also important to take along a laundry bag so all of the clothes can be stored in one place ready for returning home.
In addition you may wish to include: books/magazines; electric radio/audio device with headphones; and other familiar items that provide comfort.
If you are escorting your mum to hospital it is vital that you remain calm and relaxed, any tension or stress can easily transfer to your mum. When you are driving to the hospital try not to focus on the fact that your mum will be staying overnight, and do not give too much information. This will avoid causing more stress or anxiety.
When you arrive at the hospital the first thing to establish is good communication with the staff. Who is the key person overseeing your mum’s stay? Talk to them; give them a good understanding of your mum. Let them know what she likes to be called, what her favourite items are and whether she requires help during meal times and going to the bathroom. Alongside this, make sure you and your mum understand the layout of the ward and show her the toilet facilities, for example.
Make sure the hospital staff have up to date and correct contact details for yourself or another relative who cares for your mum. It’s fair to request that you are present at all meetings and consultations concerning your mum. Remember you may even be able to request that you can stay overnight with your mum and visit outside of usual visiting hours. This is dependent on individual hospital policy but we recommend you ask.
Planning end-of-life care
My mother has vascular dementia and is in hospital following a fall. She has had a hip replacement but her recovery has not been good. She is unable to walk now, she is not eating and drinking, and has been treated for pneumonia and a urinary tract infection. I don’t think she is going to get any better, so I would like to look after her at home as she always had a wish to die at home. The nurse has said my mother should go to a nursing home as I won’t be able to cope at home. Is this right?
Firstly, speak to the hospital doctor and Discharge Coordinator and let them know that you would like to care for your mother at home. She may be eligible for Continuing Care Funding, so ask the ward lead nurse to get this process underway as it can be lengthy. This funding will cover your mother’s nursing needs at home. It may not cover the full cost of the care but will cover a large part of it.
Request an Occupational Therapy assessment of your home so that the right equipment can be supplied. This may be a specialist bed, a hoist, an air mattress and a suitable chair.
You will need some help with caring for your mother at home. The Discharge Coordinator can help with this and you can look at advice that Age UK have and The Live in Care Hub, as you can have help coming in intermittently through the day, or live in care which supports 24 hours a day, seven days a week.
Speak to your mother’s GP about her discharge and ask about the District Nurse team and the Palliative Care Team. Both these teams can help and support you with your mother’s care when she gets home, and the hospital will refer her to their care when she is discharged.
Planning for the future
Since learning about my mother’s diagnosis of dementia, I have felt overwhelmed with what this may mean for the future. What do you advise?
We all have different ways of coping with life changes, and adjusting to changes takes time. Being given a diagnosis of dementia, or hearing that someone you care for has this diagnosis, can be a daunting, unsettling and often stressful experience. Coping with life changes can be difficult, and from diagnosis onwards, there are many changes that you both may experience. However, there are things you can do to make the journey go more smoothly, and there are sources of support and help available.
Look after yourself
Don’t be too hard on yourself. This means being kind to yourself, and reassure yourself that you are doing your best for the person you care for. Feelings of guilt are common emotions when caring for someone with dementia. Carers often wish they could do more, or ‘better’.
It is important for you to eat and sleep well, and also to look after your own health. Take good care of yourself so that you can be in the best of health to cope with any issues you may come across. Some people find writing lists useful to break down the steps needed for each decision or task they may need to make. And maintain your sense of humour – this is a healthy approach for both of you.
Look for simpler options
Be prepared to challenge your normal standards in order to make your life easier. Look for simpler options rather than trying to make life situations perfect. For example, if the person you care for refuses to wear a suit or make-up as they usually do, don’t force this issue. If they would rather wear a coat indoors, or two different coloured slippers, that is ok too. Tell yourself to ‘let it go’ so that you can focus on the more important issues. As far as possible, aim to include the person you care for in decisions and be flexible.
Ask for help
Don’t be afraid to say ‘No’, and don’t be afraid to ask for help, or accept help from others. Remember, you don’t have to cope alone. And try to take time for yourself, to put the situation into perspective. Talk the situation through with friends and family. Others often want to help and would like to feel useful, so when they offer say “yes”. Some people like to be asked to complete tasks or to visit so they can feel they are involved.
Try to plan ahead if possible, so that if the situation changes, you have a second plan or alternative options. Many families find it useful to look for a care home that provides respite (a break) should they need it in the future. Some people hold family meetings to discuss a plan and share the care. Many carers find it useful to look at finances early on. This may include Lasting Power of Attorney, benefit entitlements, or setting up direct debits for automatically paying monthly bills. With some plans in place, you can start to focus on living life and put some of these worries aside.
I care for my husband who was diagnosed with Alzheimer’s disease eight years ago. I promised I would look after him, but I am exhausted and often feel that I cannot carry on any more as he does not know who I am or where he is. It feels pointless carrying on. What can I do?
Eight years is a long time to look after a person with dementia. Caring is emotionally and physically draining, and everyone needs a break and, at some point, a lot more help.
Deciding when to get some help can be very, very hard as it can feel like a betrayal despite the changes your relationship has gone through.
There is help for you though. Some people find joining a carer’s group helpful, or if you would prefer more individual support, please phone our Admiral Nursing Direct helpline where you will be able to speak to a dementia specialist nurse for individual advice and support, and to find out if there is an Admiral Nurse available in your area.
Planning for the future is also very important for you and your husband. Having a plan can help you to cope with the decisions for the future. Looking at different care options doesn’t mean you are giving up; you are just considering what could help and what support can be accessed in the future.
Physical health as a carer
My father is physically unwell but he is caring for my mother. He refuses to go to the GP to get his health attended to. What can I do?
Research shows that carers supporting someone living with dementia are more likely to experience poor health, stress, depression or physical disabilities than the general population. This is because caring for someone can be very demanding on your own physical and mental health.
His role is vital in supporting your mother, but not to the detriment of his own health. If your father does not visit his GP for his own health issues, this could affect his ability to care for your mother now or in the future. It is important that he gets information and support for himself and your mother as soon as possible.
Consider asking someone else to talk with your father. They may be able to persuade him differently. Ask him if you can contact the GP on his behalf to discuss your concerns. Reassure him that he shouldn’t feel shame or guilt in asking for help for them both. There is support available!
Ask other friends or family to offer support, e.g. taking your mother out for the day, help with housework.
It is useful to find out what other support is available in your area, such as respite, day centres, sitting services, local support groups. Contact your local Social Services department; they will be able to advise on available support. Specifically ask for a ‘Community Care Assessment’ for your mother, and a Carers Assessment for your father. They are both entitled to this assessment and it will enable the authorities to identify what their needs are.
Please phone the Admiral Nurse Direct helpline where you will be able to speak to a dementia specialist nurse for individual advice and support, and to find out if there is an Admiral Nurse available in your area. Our nurses can provide an objective view about your situation, provide a professional listening ear, and give your father permission to accept whatever feelings he may be experiencing.
Mental health and wellbeing
I’m worried about my Mum who cares for my dad full time; he has quite advanced dementia. She’s very quiet and she doesn’t appear to want to engage in conversation as usual. It’s like she’s lost her enthusiasm for life. What should I do?
Your Mum may be physically and emotionally drained from caring for your dad full-time. You should encourage her to visit her GP to check whether she has a physical medical condition. If she is physically healthy, it may well be that she is depressed and feeling socially isolated, especially if she isn’t getting any time for herself.
Your Mum should look to join a support group where there will be other carers with the same experience who she can talk to. If you live nearby, you could arrange to look after your Dad for a few hours on a scheduled basis so your Mum gets some respite time and can do a hobby or attend a social group. Or if this isn’t possible look into paid care; for a reasonable price a carer can come and sit with your Dad for a few hours at a time. Talking to your mum will also help her to open up as she may be at the stage where she feels she can no longer cope and needs greater support with care for your Dad, but feels guilty and doesn’t know how to go about addressing the situation.
Dealing with grief
My husband died six months ago. I looked after him for nine years and watched the Alzheimer’s disease gradually take him over. When he first died I felt a sense of release. Six months on I am feeling so different. I would like him to be here as I miss him so much. I wouldn’t mind if he couldn’t do all things he used to, I just want him back. Is this a normal way to feel as my friends keep telling me I should start living my life again and I just can’t?
Sometimes our feelings surprise us, as we can long for a situation to end, and that drives us forward to manage some very difficult phases of our lives.
Your feelings about your husband’s death are not unusual. Caring for a person with dementia is often likened to a living bereavement because of the changes the illness can bring to the life of the person with dementia and their family.
Living with a roller coaster of feelings for so many years can make bereavement after the person has died difficult to manage. Feelings of sadness, anger and loneliness are natural feelings when someone close to you has died. However, if these feelings are taking over your thoughts for most of the day, and preventing you going out and completing everyday tasks it may be as well to go and talk to your GP. In addition you could phone our Admiral Nursing Direct helpline where you will be able to speak to a dementia specialist nurse for individual advice and support, and to find out if there is an Admiral Nurse available in your area.
It is possible to have depression after someone has died, so if you have noticed prolonged low mood (e.g. tearful, unable to ‘think straight’), difficulty in sleeping and a poor appetite, do make an appointment with your GP.