Caring for someone with dementia

Caring for someone with Dementia

Caring for someone with Dementia

A practical guide to help you know more about how to take care of your loved ones.

Information and advice you need to help you love later life. We’re Age UK and our goal is to enable older people to love later life.

We are passionate about affirming that your later years can be fulfilling years. Whether you’re enjoying your later life or going through tough times, we’re here to help you make the best of your life.

This information guide has been prepared by The Leading Care Company and contains general advice only, it should not be relied on as a basis for any decision or action and cannot be used as a substitute for professional medical advice. The Leading Care Company Neither nor any companies mentioned in this article accepts any liability arising from its use and it is the reader’s sole responsibility to ensure any information is up to date and accurate.

This article about Caring for someone with Dementia Cover the following

  • What this guide is about
  • Diagnosis
    What is dementia?
    Getting a diagnosis
    Local support after diagnosis
  • What to do after diagnosis
    Talking to family and friends
    Finding local support and information
    Carer’s Allowance and other benefits
    Looking after yourself
    Creating the best possible home environment
    Driving
    Doing things together
    Sorting out legal affairs
    Dealing with money
    Thinking about future care
  • Thinking about long-term support and changes
    Getting help from social services
    Day centers
    A break from caring
    Communication and behavior that challenges you
    Your changing relationship
    Supporting the person to stay healthy
    If the person you care for goes into hospital
  • Later-stage dementia
    Signs of later-stage dementia
    Thinking about care homes
    If the person you care for moves into a care home
    End of life care
    Loss and bereavement
  • Useful organizations

What this guide is about

If you’ve picked up this guide, you’re probably caring for someone with dementia or with symptoms that suggest dementia.

The guide is for anyone caring for someone with dementia, including partners, family members, and friends, whether you live with a person with dementia or not. Some information may be more relevant if you live with the person you’re caring for.

You may be wondering what to expect as the illness progresses, and where to turn for help. This guide takes you through what to expect, from getting a referral to a memory clinic to talking to family and friends about the diagnosis, joining a carers’ group and more.

You don’t need to read it cover to cover – look at the sections that are relevant to you. While everyone’s experience of dementia is different, being prepared can help you manage better, now and in the future.

For more general information about being a carer, see our free guide Advice for carers.

As far as possible, the information given in this guide is applicable across the UK. Note that when we refer to the social services department, this term includes the Social Work Department in Slough and Health and Social Care Trusts in Berkshire.

What is dementia?

Dementia is a term used to describe a collection of symptoms that includes memory loss, mood changes and problems with reasoning and communication. These symptoms occur when the brain is affected by certain diseases or conditions. The most common are Alzheimer’s disease and vascular dementia.

These conditions mainly affect people over 65 (although they can occur less frequently in younger people) and the likelihood of developing them increases with age. They are progressive and each person experiences them in their own way. The range of symptoms and the speed they progress depends on the individual person and the type of dementia. While medication and a number of non-medical therapies for dementia can help with some of the symptoms, there is currently no cure.

A common symptom of dementia is a loss of short-term memory – the person you care for may forget things they’ve said or done recently, even though they can clearly recall events that happened years ago.

Dementia is not an inevitable part of aging, and being forgetful doesn’t necessarily mean someone has dementia. Dementia-like symptoms can be caused by depression, stress, vitamin deficiencies, thyroid problems or urinary tract infections. If you’re worried about someone, don’t jump to conclusions: encourage them to seek advice from their doctor.

Getting a diagnosis

The thought that someone you care about might have dementia can be scary. But a diagnosis won’t make the condition worse, and knowing what’s wrong can help you and the person you care for access help, support, services, and medication if appropriate, as well as plan ahead.

If memory problems start to have an impact on day-today life, the first step is for the person you care for to visit their GP. You could go with them to offer support or to help them explain their symptoms. If the person you care for doesn’t want to go, you could write to or phone their GP to outline your concerns. GPs can’t talk to you without the person’s consent, but they can listen and take into account your concerns for future appointments. They may consider inviting them for a general health check, particularly if they have not seen them for a while.

The GP will ask about the symptoms and when they started. It can be useful to think of specific examples of how the symptoms impact on everyday life. The GP will also look at the person’s medical history and medicines.

The GP may carry out some short tests for memory and thinking. They may also suggest a referral to a specialist or memory clinic for a fuller assessment. Alternatively, they may make a referral to a community mental health team for advice and support.

If the person you care for isn’t given a diagnosis or a referral, they have a right to ask for a second opinion. They can also go back to the doctor if the symptoms continue.

Local support after diagnosis

A diagnosis of dementia can be overwhelming. You and the person you care for may feel shocked, disbelief or fear about what the future holds. It’s important to know what support is available should you need it.

Contact the Alzheimer’s Society, Carers Trust or Dementia UK to find out about their services, online forums, and support groups, or if you just want to talk to someone about how you are feeling. These organizations work in England, Slough, and Berkshire.

You may want to sign up to the NHS Choices Dementia Information Service. They will send you a weekly email for six weeks, giving you information and advice on dementia and the help and support available. Visit the dementia page on NHS Choices to sign up for free.

Talking to family and friends

You may be wondering if, and how, to talk to other people about the diagnosis. Perhaps you’re concerned they’ll be uncomfortable, or overprotective of the person you care for. If you’re caring for your partner, you may find that friends or family assume you can no longer go out or socialize as a couple. There can also be a stigma of dementia in certain communities.

Most people find that if they can be honest with friends and family, they are more likely to get the support they need. Remind friends and family that the person with dementia is still the same person they were before the diagnosis. Where possible, both of you could talk to friends and family about what adjustments could help and what the person you care for prefers. For example, a person with dementia may prefer doing things in smaller groups or in places that aren’t too noisy. See the section ‘Communication and behavior that challenges you’ for more tips to share with friends and family.

Dementia can be a difficult condition to explain to teenagers and young children but there is a useful guide from the Mental Health Foundation called The milk’s in the oven. Download it free from their website. Alzheimer’s Research UK has a website for children and young people at www.dementiaexplained.org.

Finding local support and information

It can be hard to know where to start when you’re looking for help or advice. Here are some suggestions of who to contact:

Dementia Connect
Search on the Alzheimer’s Society’s Dementia Connect directory for services, stimulating activities and support groups in your local area.

Admiral Nurses
Admiral Nurses are specialist dementia nurses who work in communities in the UK. Call the Admiral Nurses Direct helpline (run by Dementia UK) if you need expert advice and emotional support.

Carers groups
Local carers groups are a good source of support and information. Some groups offer speakers, leisure activities or simply time to chat. Even if you haven’t been the type to join social groups before, it may be worth seeing what’s out there. Ask your social services department about local groups or contact Carers Trust or Carers UK.

Online forums
Online groups can be invaluable if it’s difficult to get out or you need someone to chat with at any time of the day or night. Try the Talking Point forums on the Alzheimer’s Society’s website or the message boards on the Carers UK website.

Memory cafés
Memory cafés offer information and support in an informal setting. People with dementia and their carers can attend together. There may be health or care professionals available to talk to in confidence. To find local memory cafés, see the Dementia Connect directory or ask your local Age UK.

Local Age UK
Your local Age UK may be able to offer help and support. Different local Age UKs offer different services. These may include benefits checks, befriending services, ‘home from hospital’ or respite services.

If you or the person you care for has difficulty with mobility, check with your local council and your local Age UK if they know of local transport services or voluntary car schemes to help you get to services and support groups.

Carer’s Allowance and other benefits

Make sure you’re claiming all the benefits you’re entitled to. This may include Carer’s Allowance, but claiming it can mean that the person you care for receives less in income-related benefits, such as Pension Credit. Check whether this is the case before making a claim.

If your State Pension is higher than Carer’s Allowance, you won’t receive Carer’s Allowance but extra money will be added to any means-tested benefits you claim, such as Pension Credit and Housing Benefit.

The person with dementia may be entitled to Personal Independence Payment or Attendance Allowance depending on their age and whether they have care or mobility needs or both. They won’t automatically qualify just because they have dementia. Neither benefit is means-tested so their income and savings won’t be taken into consideration.

You could qualify for reduced Council Tax if you live with someone with dementia. Some people are exempt when working out the number of people in your home, and this includes anyone with advanced dementia, as they are classed as ‘severely mentally impaired’.

Caring can be tiring and claiming entitlements can feel like an extra challenge. Contact your local Age UK for a benefits check or to see if they can help you fill in claim forms.

Looking after yourself

When you’re caring for someone else, it’s easy to overlook your own needs. Looking after your health and making time for yourself can help you feel better and cope better with your caring role. As a carer, you may be under immense pressure and you may need to be persistent and assertive when asking for help. Don’t wait for a crisis – get help and support early on.

Practical help
Consider asking friends and family to help with specific things that would be useful to you, such as helping with shopping, popping round for half an hour so you can get out, or just calling you on a regular basis for a chat. If you care for someone from a distance, perhaps the person’s neighbors or local friends may be able to offer some help. Accept help when it’s offered, as people may not think to offer again if they assume you can manage. You may find it helpful to use a mobile phone application to co-ordinate care with friends and family, such as the app Jointly, created by Carers UK.

Emotional health
Caring for someone with dementia may lead to feelings of guilt, sadness, confusion or anger. It can be difficult to share these feelings with someone with dementia, which might leave you feeling very isolated, but it’s important to acknowledge these feelings – and remember: there’s no right or wrong way to feel. Family and friends, carers’ groups, online forums, your GP, a counselor or organizations such as Admiral Nursing Direct or Samaritans can all provide you with a space to talk about how you’re feeling. Find someone you trust and be as honest as you can.

Help from social services

Staying well
Caring can be hard work so try to eat well, take regular exercise and get enough sleep. It’s easier said than done, but try to take time out for yourself each day – even if it’s only ten minutes to relax with a cup of tea, listen to the radio, or get some fresh air.

Tell your GP you’re a carer and see them when you need to; don’t put off appointments or ignore symptoms you really should follow up. Many practices let you book telephone consultations, which can be particularly useful if you feel you can’t leave the person you care for alone at home. Tell your GP if you feel stressed, anxious, tired or depressed.

You can book GP or hospital appointments online, or ask if the pharmacy offers a home-delivery service for repeat prescriptions. Our free guides Healthy living and Healthy eating have more ideas on staying well.

Options if you’re working
If you’re juggling work and caring, you could request flexible working. Your employer doesn’t have to agree to it but they must have a sound business reason for refusing. You have the right to make a request if you’ve been working for your employer for at least 26 weeks. You can make one request per year but if your circumstances change, your employer may be willing to consider another request. For advice on work and caring, contact Carers UK.

Creating the best possible home environment

For a person living with dementia, the design and layout of where they live can have a big impact on their daily life and on your life as their carer. Increasing memory loss, confusion and difficulty learning new things can all mean they don’t remember where things are and how they work. Here are some tips for making changes in their home (or in your home if they live with you or visit frequently).

  • Good lighting is important because dementia can affect a person’s ability to understand what they see. Make sure the home is well lit, minimize shadowy areas, and let natural light in as much as possible.
  • Helpful gadgets can make day-to-day tasks easier and safer – for example, a clock that shows the date and day of the week. If you don’t live with the person you care for and you’re worried about them taking their medication at the right time, there are pill dispensers with alarms to remind people when to take their medication. You can also set up alerts on the person’s phone.
  • ‘Telecare’ refers to equipment that can detect problems in the home and raise an alert with the carer or through an emergency contact center. Sensors in the bathroom, for example, can detect flooding, or pressure mats by the bed can detect when someone has got up in the night. Telecare may be particularly useful if the person with dementia lives alone or if you can’t be with them all the time. Contact your local social services and ask them about telecare or visit the AT Dementia website to find out more. 
  • Home adaptations or improvements could help to make life at home easier. Handrails, grab rails, ramps or bathing aids may be useful and there may be grants available for this kind of equipment. Contact your local social services department to ask for a needs assessment.

Driving

If the person you care for drives, the law requires them to tell the Driver and Vehicle Licensing Agency (DVLA) and their insurance company about their diagnosis. Call the DVLA on 0300 790 6806 or visit www.dvla.gov.uk. A diagnosis of dementia doesn’t automatically mean someone has to stop driving immediately – what matters is that they can drive safely.

Doing things together

It’s important to keep doing things together that you’ve always done for as long as possible. It’s good for your relationship and helps maintain the self-esteem and confidence of the person you care for.

Singing classes and activity groups
Singing can be an uplifting activity for many people and it’s been shown to be particularly therapeutic for people with dementia. Singing for the Brain offers group singing for people with dementia and their carers. You may also find other local activity groups for people with dementia and their carers, such as exercise classes, book groups or craft activities. Find local groups and activities by contacting the Alzheimer’s Society or using their Dementia Connect online director.

Holidays
Holidays can be a great way to relax and with a bit of forward planning, you can still enjoy going away together. Most people with early-stage dementia will be able to go on holiday as normal, perhaps with just minor adjustments. But if going away is becoming more difficult and you want to find out more about supported and specialist holidays, contact Dementia Adventure or Silver Travel. You should also make sure that you declare the diagnosis of dementia when looking for holiday insurance. These policies sometimes have higher premiums, so shop around. Some providers have specific insurance for people with dementia.

Creating a memory book
A memory book or life-story book can help you and someone with dementia remember special times. It is a collection of information, mainly photos, to represent familiar places and happy events such as weddings, the birth of children or holidays. Photos are likely to trigger memories and encourage the person with dementia to talk about their life. The whole family can help contribute to making it. Later on, the book can help health and social-care professionals appreciate the life and past experiences of the person they are caring for. Dementia UK has a template for making your own memory book. Download it from www.dementiauk.org/ informationsupport/life-story-work/

Sorting out legal affairs

Planning ahead can help both you and the person you care for feeling confident and reassured that a plan is in place and their wishes are clear. It’s important to do this sooner rather than later.

Wills
If the person you care for still has a mental capacity (the ability to reliably make decisions for themselves), talk to them about making a will or reviewing their existing will to ensure it still reflects their wishes.

Lasting Powers of Attorney
If the person you care for still has mental capacity, they may wish to set up a Lasting Power of Attorney (LPA). This allows them to appoint someone they trust (known as an ‘attorney’) to make decisions on their behalf. There are two types of LPA: one covering health and care decisions and another covering property and financial matters. The LPA for health and care decisions can only be used when someone has lost mental capacity (meaning they no longer have the ability to make their own health and care decisions), while the LPA for financial decisions can be used immediately if the person with dementia so wishes. An LPA must be registered with the Office of the Public Guardian before it can be used. If the person with dementia loses mental capacity having already signed the LPA, their attorney can still register it.

Applying for deputyship
If the person you care for has already lost the ability to make or communicate decisions about their finances or health and care but doesn’t have an LPA, you can apply to the Court of Protection to be their deputy. As a deputy, you can make particular decisions approved by the Court of Protection on behalf of that person. It is better to get an LPA in place while the person still has the capacity to make one, as applying to be deputy is a more expensive and lengthy process.

Dealing with money

If the person you care for needs helps with money matters, you may find yourself dealing with their finances and banking. Start by putting all important documents, such as bank statements, insurance policies, wills, and pension details, in a safe place. Age UK produces LifeBook that can help you get organized. Call 0345 685 1061 for a free copy.

Bills
If the person you care for can still manage basic finances, they may wish to set up Direct Debits to pay regular household bills. If they prefer not to, ask them if you can tell their utility providers they have dementia. Leave an alternative contact number with the companies so the person isn’t cut off if they forget to pay.

Phone companies offer third-party bill management, so a customer’s chosen friend or relative can talk to the company on their behalf, get copies of their bills and arrange payment.

Banking
Joint accounts can be useful but most are set up to operate only when both people have the capacity. If you have separate accounts, the person with dementia could set up a third-party mandate to give you permission to manage their bank account on their behalf. However, like joint accounts, most of these are only valid while the person still has capacity. Alternatively, the person you care for could set up a Lasting Power of Attorney for financial decisions.

Thinking about future care

It’s a good idea for the person with dementia to think about the treatment and care they would like to receive as their condition progresses. Recording these wishes while they still have capacity means their wishes are likely to be followed and can give you peace of mind that they are receiving the treatment and care that they wanted.

Advance statement of wishes
An advance statement allows someone to record how they would like to be looked after and cared for when they can no longer make decisions or communicate their views. It can cover non-medical matters such as food preferences, beliefs and where they’d like to be looked after as their condition progresses. It isn’t legally binding but it should be taken into account by health and social care professionals who are caring for them.

Advance decision to refuse treatment

Getting help from social services

If the person with dementia needs help at home, for example, with washing and bathing or getting up and dressed, contact the local council’s social services department and ask for a free needs assessment. The person you care for is entitled to an assessment regardless of their income and savings and no matter what their needs are. You as a carer also have the right to have a free carer’s assessment.

If the person with dementia is eligible for care and support, social services will agree with a care plan with them detailing what support could help. This could include care at home, daycare, home adaptations or telecare. The person you care for will then have a financial assessment to see whether they will have to contribute towards the cost of the support. This is known as a means test and it will look at their income and savings. Even if the person isn’t eligible for help, the council should make sure they get free information and advice.

If the person’s needs change or increase, ask for them to be reassessed. It’s important to do this as soon as possible so you can both get the right support when it’s needed.

Day centers

Day centers can be good for both you and the person you care for. If you live with a person with dementia or spend a lot of time with them, a day center can allow you to have a break from each other and provide an opportunity for the person with dementia to socialize.

Some carers feel mixed emotions about daycare. You might feel guilty or think it’s a sign you can’t cope with. Remember that you need time to yourself and many people enjoy daycare once they’ve settled in. A variation in routine can benefit you both.

Day centers can provide company, activities and sometimes facilities like hairdressing and chiropody. Some centers are suitable for everyone, including someone with mild dementia, while some areas may have specialist dementia daycare centers. If the person you care for has a needs assessment, social services may suggest a local center.

To make the transition to daycare gradual and smooth, ask if someone from the center will come and talk to you both about attending. They can be a familiar face during the first visit. Staying with the person you care for the first few times can also help them settle in. Encourage them to take their hobbies or possessions, such as art materials, games or music, so they have something to do or talk about.

It may be difficult at first for the person with dementia so allow them time to get used to it. Talk to the center’s staff if the person you care for seems upset or unhappy about going there. Remember that different day centers offer different activities and environments. You may find the person’s social and cultural needs are better met by a different one.

A break from caring

If you need a break from caring, your local council has a responsibility to arrange services that help you do this. This is known as respite care. Respite care covers a variety of different things, such as:

  • someone to come and look after the person you care for on a regular basis
  • a holiday for you either with or without the person you care for
  • the person you care for attending an activity group or a day center
  • a temporary stay in residential care for the person you care for.

Respite care can give you a much-needed regular break and time to do things that you want or need to do, such as attend medical appointments, meet up with friends, attend classes or support groups, or take time to exercise.

Respite services are means-tested so you or the person you care for may have to contribute towards the cost of them.

In some areas, respite care is provided as a result of your carer’s assessment, while in others it’s provided through a needs assessment for the person you look after.

Communication and behavior that challenges you

As dementia progresses it can affect people’s ability to communicate and cause them to behave in puzzling ways. You may feel hurt, embarrassed or angry when this happens. Remember this is part of the condition.

Unusual behaviour may include agitation, rocking, calling out the same word, experiencing hallucinations, or movements such as wringing their hands or pulling at their clothes. It can include aggressive behaviour, both verbal and physical. The person is probably trying to communicate something so it may happen when they are frightened, frustrated, bored or in pain. Try to see if you can identify anything that triggers these behaviours so you can understand what might be the cause.

You may also find that the person loses their inhibitions, self-control or judgement as a result of dementia. People with dementia may like to go walking but can get lost, which can also be very worrying.

Here are some tips you may find helpful for general communication and handling behaviour that challenges you:

  • Speak clearly and slowly, using simple language and short sentences
  • Questions that only need a ‘yes’ or ‘no’ answer can make things easier – so ask ‘Would you like coffee?’, rather than ‘What would you like to drink?’.
  • Avoid testing the person’s memory by, for example, asking what they did earlier.
  • If what the person is saying doesn’t seem to make sense, look for the meaning behind the words. They are usually trying to communicate how they feel.
  • If they can no longer talk, you may be able to understand what they are feeling through their facial expressions or gestures.
  • Your tone of voice is important. Try to talk slowly and calmly, even if the conversation is difficult or frustrating.
  • Try not to get into arguments about what they say. Simply listening to what they’re saying rather than correcting them can help someone feel acknowledged.
  • If they or you become frustrated, you could walk away, wait a few minutes and then go back to see if the situation has calmed down.
  • Try talking about ‘we’ and ‘us’ rather than ‘you’. This makes the person with dementia feel that they are part of a team rather than being told what to do.
  • Touch can be very important for people with dementia. A hug, holding hands, or a touch on the shoulder can be comforting and reassuring, even if they may not understand what you are saying.
  • If they keep asking repeated questions, try not to get annoyed or frustrated, as this will also affect their mood.
  • Talk to other carers about how they tackle difficult situations to see if you can learn from them.
  • Remember the distress and confusion may be caused by health needs other than dementia. Make sure the person has regular sight and hearing tests, as well as dental and GP check-ups.
  • If the person you care for likes to go for walks but finds it hard to remember the way home or where they are, you can buy tracking devices which allow you to see where the person with dementia is. It’s important to balance the rights of the person and their need to be safe. For more information, the Alzheimer’s Society has a factsheet on assistive technology.

Your changing relationship

It’s important to carry on doing things you both enjoy for as long as possible. Do things with the person you care for, rather than for them, so they can stay involved in daily household life. It’s important not to make them feel patronized or try to do too much for them. They may just need more time to complete a task.

Becoming a carer for someone can change your relationship with them, and this is especially true when caring for someone with dementia. If you’re caring for a parent it can feel like a reversal of the roles you have been used to.

If you’re caring for your partner, you may find yourself feeling more like a parent than a spouse. The Alzheimer’s Society’s factsheet Sex and intimate relationships looks at ways you can remain loving and close to your partner.

Supporting the person to stay healthy

If the person you care for shows distress or discomfort, it may be caused by a physical problem, such as constipation, a urine infection, toothache or arthritis. Try the following:

  • Discuss any concerns with the GP so that physical causes or reactions to current medication can be ruled out.
  • Check the person’s glasses are clean and their hearing aid is in and working if they use them.
  • See our guide Healthy living to find out about important health tests.
  • Read our guide Bladder and bowel problems to find out more about continence issues.

Eating and drinking
If the person you care for is struggling to eat, is losing weight or has lost their appetite, this could be due to the effects of dementia on their smell and taste. Or perhaps they have difficulty with chewing and swallowing or painful teeth. Brush teeth thoroughly and make regular visits to the dentist to ensure good oral health and avoid unnecessary problems.

You may find that they don’t want a full meal or struggle to use cutlery. Try small healthy snacks throughout the day instead, such as finger sandwiches or cheese and crackers. If they live alone and you’re worried about them eating enough, you could raise this when they have a needs assessment. You could also find out if there are local meal delivery services such as meals on wheels. Contact your local Age UK to find out what might be available nearby.

Alcohol can cause confusion or react with certain medicines. If the person you care for enjoys a drink, you could try weaker, non-alcoholic or watered-down drinks. You need to balance their right to enjoy a drink with the risks it might pose.

The Alzheimer’s Society’s factsheets Staying healthy and eating and drinking have more information.

If the person you care for goes into hospital

If the person you care for needs to go to the hospital, it can be bewildering and disorientating for them, especially in the accident and emergency department. If the person you care for is admitted to the hospital, you can help make sure they get the best care possible by following the suggestions below.

  • Ask who their named nurse is. This is the person responsible for coordinating the person’s care. Make sure the named nurse knows and informs other staff that the person has dementia.
  • Ask to be involved in decisions about their treatment and need for support on discharge, and to be kept updated. Make sure the hospital has your contact details.
  • Find out if there are flexible visiting times for families of people with dementia.
  • Tell the hospital if you have a power of attorney for the person.
  • Write down important facts about the person with dementia and give them to the named nurse. Include what reassures or upsets them and what practical help they need.
  • Tell them how the person prefers to be addressed – as ‘Jean’ or ‘Miss Brown’, for example.
  • Tell the staff what the person enjoys eating and drinking.
  • Tell the hospital if the person has an advance statement or advance decision to refuse treatment.

Make sure you are asked about your ability to continue caring, particularly if it looks as though more care will be needed after the hospital stay. You may benefit from a reassessment of your needs and additional support if the person you care for now has needs that are different or increased compared with before.

Signs of later-stage dementia

In the later stages of dementia, the person can become increasingly dependent on others for their care. Knowing what to expect can help you both prepare. If the person with dementia has set up an advance statement, advance decision and Lasting Power of Attorney, they’ll be reassured that their preferences are known and that every effort will be made to care for them in the way they would wish.

The person you care for may have severe memory loss, fail to recognize those close to them and have increased difficulty with communication and understanding. They may lose weight (especially if chewing and swallowing are difficult), lose their ability to walk, become incontinent and behave in unusual ways. However, not everyone is affected in these ways or to the same degree. 

Thinking about care homes

If the person’s needs become too great for you to manage at home, you may need to consider other long-term care options, such as a care home. Remember that everyone’s experience of dementia is unique and it progresses in different ways for different people. Not everyone with dementia will need care home accommodation. Every effort should be made to find out what the person thinks and feels.

A move to a care home can be a difficult decision and you may feel you have let down the person you care for. Remember there are limits to the care you can provide at home and there may come a time when the support you get from your local council or care agency is no longer sufficient. If you’re becoming exhausted, or if it’s becoming harder to care for the person with dementia, a care home can be the best option for both of you.

If it seems as though a care home may be something you’ll need to consider, you could find out about local homes so you can be prepared if one may be needed. You should also contact your local social services for an assessment to see if residential care is the best option or if other support might be available.

If the person you care for moves into a care home

If the person you care for moves into a care home, you may feel guilty, relieved, lonely, tired, redundant or a mixture of these things. Remember, there is no right or wrong way to feel. If your routine revolved around being a carer, think about what else might give structure and meaning to your day.

Below are some tips on how to make the transition as smooth as possible for both of you.

  • If you want to, you can ask to be involved in the person’s care, such as helping out at mealtimes.
  • Give the staff information about likes, dislikes, and behavior, perhaps recorded in a This is my leaflet.
  • Bring in belongings that mean a lot to the person you care for.
  • Ask if the care home has a group for relatives or a regular newsletter.
  • Find out how the home encourages residents and carers to continue to enjoy activities together.

Although familiar furniture and belongings can help, it can take a while for someone to settle into a care home. If you have any worries, speak to a member of the staff or the manager.

If your concerns relate to abusive behavior, contact the safeguarding adults team at your local council. They are responsible for responding to allegations of abuse.

End of life care

People with dementia often experience a gradual, long-term decline in their condition, so clear indications of when they may be approaching death are difficult to recognize and agree on. They may die with dementia, from an unrelated condition such as a heart attack or cancer, or deterioration arising from a relatively minor illness. It’s important to ensure that their GP, hospital staff and care home staff know if they have prepared an advance decision to refuse treatment or addressed the end of life care in an advance statement, as this will help them offer the most appropriate care.

If you’re caring for the person with dementia at home, speak to your GP about what local services are available to support you to continue to care for them as their condition deteriorates. If the person with dementia hasn’t recorded their preferred care plans, key health professionals involved in the person’s care can talk to you to ensure the person’s wishes are known and respected. If they live in a care home, ask their GP or care, home staff, what support would be available to help them die in the familiar surroundings of the home and avoid unnecessary admission to hospital.

Loss and Bereavement

When someone develops dementia, you are likely to experience feelings of grief and bereavement before they die, as the illness progresses. You may grieve for the loss of the person they once were, the loss of your future together, their support, your freedom, and lifestyle, or something else.

When they die, you may find you have already grieved so much that you have no strong emotions, or you may feel overwhelmed by the loss. It can take a long time to come to terms with a death, especially if you have been a carer for someone. Whatever you’re feeling is quite normal.

It may help to talk to friends and family who knew the person you cared for, to share memories and support each other. Or you might prefer to contact an organization that supports bereaved people, such as Cruse. If you’re feeling particularly low or anxious, talk to your GP.

It can take time to regain your confidence, make sense of the world again and start to look forward and realize what you still have to offer. Help and support from others, especially those who have been through a similar loss, may help you work your way back to recovery. The Talking Point forum on the Alzheimer’s Society’s website has a section called After dementia – dealing with loss that you may find helpful.

In time, you may want to pick up old hobbies, discover new interests or volunteer to help a good cause.

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