- Alzheimer’s disease is the most common form of dementia. As it’s a progressive disease – that gets worse over time – it’s categorised into three main stages: early, mid and late. The level of care differs depending on the stage.
- There are a variety of care options available – live-in care, assisted living, domiciliary care and residential care are the common options. There’s no one-size-fits-all solution here, it completely depends on your individual circumstances.
What is Alzheimer’s disease?
Alzheimer’s disease is the most common form of dementia.
With over 520,000 living with it in the UK, Alzheimer’s disease (AD) is the most common type of dementia, equating to 50-75% of all diagnosis. Its recognisable name comes from Alois Alzheimer, the German psychiatrist and neuropathologist who first identified the condition.
Alzheimer’s can affect different parts of the brain, but primarily impacts the hippocampus, the area responsible for our day-to-day memory.
It works to gradually degrade neurological capability by blocking connections between nerve cells with protein buildup in the form of amyloid plaques and tangles. As the connections between cells are lost, they die and the brain tissue — and therefore function — dies with them.
Alzheimer’s is a progressive disease, meaning it gets worse over time. And, for the time being, it’s incurable. Although, as we discuss with an expert from Oxford University here, there is a large research community working together to find a solution.
Despite all of this, hope isn’t lost. It’s possible to live a long, happy and fulfilled life after a diagnosis. And, even as the condition becomes more acute, there will often be surprising and joy-filled moments of reconnection.
It’s likely there will be ups and downs. But, by understanding what the future will bring and planning for all eventualities, you can jump every hurdle the disease will put in your way. This guide has been written to help you do just that.
Care options for those with Alzheimer’s
The care option that’s best for you will depend on your personal preferences, as well as the stage you or your loved is at on their dementia journey. So let’s run through some of the available options.
Residential dementia care
According to Alzheimer’s Research UK, just 39% of those living with dementia are living in a care home. The remainder live in the community, using services such as live-in care.
The care home does have certain advantages, it’s easier to organise as local authorities are usually geared towards using them. This can make the process of getting everything in place that little bit easier.
People with dementia who have acute, late-stage symptoms may benefit from specialist facilities. Medically-led care services, such as a nursing home, mean your loved one will have a medical professional on-hand to help in all outcomes. You’ll know whether nursing care is right for your loved one by looking in their care plan.
Care home fees for people with Alzheimer’s
A standard care home can also be a good option for a person with dementia, especially in specialist Alzheimer’s care facilities. There are Alzheimer’s care homes, designed particularly around the needs of a person with Alzheimer’s. However, they are both difficult to find and expensive.
Generally, the amount you’ll be spending on a residential care facility ranges widely. There are significant regional cost variations. If you’re paying for care yourself, the average cost is £845 per week. But this average increases to over £1500 in South East England and London
Alzheimer’s home care
Live-in care, the option provided by Elder, is where a specialist in Alzheimer’s or dementia care moves into a spare room. They do everything required to look after your loved one as the condition progresses. This ranges from light household support in the early stages, to more intensive support in the later stages.
- Remain in the community – Keeping precious routines and supportive social networks. This is increasingly linked with reducing the risk of cognitive decline and depression, especially for those who are living with a form of dementia, such as Alzheimer’s.
- Getting out and about – Live-in care carries a 64% reduction in the likelihood of being housebound. This is linked to reduced physical and mental health problems, and mortality. Those who don’t get out and about in later life are less likely to be socially active. This could have an impact on the speed in which Alzheimer’s progresses.
- Keep pets and animals – There is an increasing body of research indicating pet ownership can reduce loneliness and associated health risks, such as a stroke and heart disease. They can also provide valuable continuity for those living with Alzheimer’s.
- Tailored nutrition – Meals can be individually tailored to a person’s nutritional requirements. Diet is particularly important for those living with Alzheimer’s disease. There are a host of diets that can help prevent and delay the onset of dementia.
- Keep the same GP – The close relationship between your loved one and their GP is not just reassuring. There is increasing research to suggest this can reduce mortality rates. When you move to a care home, this relationship is put at risk. When you receive care in your own home, it’s guaranteed.
Early-stage Alzheimer’s care
In the earlier stages of the condition, it’s not usually necessary to have care in place. But it is time to start considering care options. You may notice your loved one increasingly struggles to cope.
As there is, unfortunately, no known cure for Alzheimer’s disease, your loved one’s symptoms, such as forgetfulness and lack of orientation, are likely to get worse over time. That makes this a prime time for planning ahead.
Get to understand the condition by seeking advice from your GP. There is also a range of well-informed charities, such as the Alzheimer’s Society, Dementia UK and Independent Age. They can help you understand the condition in more detail and help plan how to adapt.
Alzheimer’s drug treatments
A GP may also prescribe your loved one any of an array of treatments on offer. These can help them to live a longer, happier and more fulfilled life than you may have thought.
Yes, things are going to change, but you may be surprised at just how long this can take. Life expectancy for Alzheimer’s can be up to 20 years following diagnosis.
Current drug treatments for early-stage Alzheimer’s are focused on a temporary easing of symptoms such as memory problems and lack of concentration.
New Alzheimer’s drugs
Aducanumab is a new drug now approved in the United States. The focus of this drug is to target the underlying degeneration of the brain, rather than focus on improving quality of life as other drugs do. It’s seen as a big breakthrough but is currently not available in the UK.
They don’t ultimately affect the progression of the disease. The following drugs are likely to be prescribed by your medical professional specifically to treat Alzheimer’s:
• Donepezil — Often going under the brand name Aricept, Donepezil is one of the most common drugs used to treat confusion associated with Alzheimer’s. It can help those who take it with improved focus, awareness and cognitive ability. Taken once a day before bed.
• Rivastigmine — Known primarily by brand name, Exelon Rivastigmine. This is similarly focused on the most common early-stage symptoms of Alzheimer’s. But also Parkinson’s and Dementia with Lewy Body – general cognitive ability and awareness. Taken twice a day.
Alzheimer’s treatments without drugs
As we go onto cover later in the guide, living well with any form of dementia is not just about potential drug treatments. It’s also about taking a holistic perspective towards wellbeing. There is an increasing body of evidence to suggest that the following can help slow the onset:
• Regular exercise — It doesn’t have to be intensive training. Keeping active can mean simply taking a walk around the local park or neighbourhood. Or is it could be going for a light weekly swim, or doing simple yoga or tai chi exercises.
• Staying sociable — Is increasingly linked with reducing the impact of memory loss and may slow neurological degeneration. Keeping current social networks or meeting new people by joining community clubs could help.
• Mental activity — Using your brain is proven to reduce cognitive decline, slowing the impact of Alzheimer’s Disease. From reading the morning paper, completing puzzles such as crosswords or sudoku, or doing arts and crafts.
For more information, read our guide on living well with dementia.
Middle-stage Alzheimer’s care
When it comes to care, this time of the diseases progress is all about being adaptable, calm and patient with increasingly difficult circumstances. This can severely impair someone’s ability to remain independent, meaning they can become increasingly reliant on someone helping them out.
For family carers, the middle stages can spell the start of frequent personal care requirements. These are generally characterised by support with washing, dressing and occasionally toileting – although this can vary significantly from person to person.
If you’re looking after a loved one, you may start to notice individual quirks related to their cognitive decline. In response, you’ll likely have developed strategies to cope.
However, with the support and advice from a medical professional or GP, the middle stages are the best time to put a professional carer in the home.
This will allow your loved one to begin to accept them into their routine for the most acute stages that are unfortunately yet to come. That aside, they can simply be a great support, offering lots of practical help.
- Household tasks – At this point in the progression of Alzheimer’s, it’s likely a person will be less able to undertake those all-important daily household tasks. Those necessary to ensure the home is a safe and comfortable environment to be in. This includes duties such as household cleaning and laundry.
- Preventing wandering – As symptoms become more acute, it can become unsafe to leave your loved one by themselves. They may begin to wander round, seemingly aimlessly, which can be a danger to themselves and others. A live-in carer is able to give someone a reassuring hand when this happens, gently guiding them back to a safe place.
- Relieving loneliness – Loneliness among the elderly can be as damaging to health as smoking 15 cigarettes per day. This can lead to depression, which is likely to accelerate the onset of symptoms. A carer can spark conversation and, over time, may even become a friend.
- Driving them to where they need to be – If your loved one’s condition has deteriorated to the extent they’re unable to drive around safely on their own, this is something a carer can do. It can be a vital way to ensure social occasions and routines are met — particularly vital for those who live in rural areas. It can also be important to have someone there who can remind them about appointments, and ensure they get there on time.
- Supporting with activities – A large body of research indicates that mental stimulation can help reduce the onset of Alzheimer’s symptoms. A live-in carer is able to help promote valuable hobbies, interests and activities. This could be everything from board games and jigsaw puzzles to cooking together and spending time in the garden.
- Continence support – At middle-stage Alzheimer’s, it’s unlikely that someone will need constant support with toileting. However, intermittently and increasingly, trouble going to the toilet will become more acute. This can be for a number of reasons, including sensory impairment and losing orientation. A carer can support someone to get to the loo, or help clean up if they don’t quite manage it.
Does your loved one’s carer need a car?
When arranging care with Elder, it’s best just to let us know. You can choose between a carer with a licence and a carer with a car, this comes at a small additional cost.
Late-stage Alzheimer’s care
As the symptoms become increasingly acute, so does the level of care that’s required. The later stages can be identified by a steep deterioration in someone’s condition. This can be an incredibly distressing time, and not one in which one family member should be left to cope caring alone.
Realistically, even if you’ve held off on getting outside help, as the disease intensifies you should really assess getting support. A live-in carer can help your loved one feel as comfortable, safe and supported as possible throughout this difficult and extraordinary time. This support can also give you the time to enjoy their company for the rest of the time they have.
Here is a run through of the kind of tasks your carer may undertake during the later stages of Alzheimer’s:
Eating and drinking
A vital component of late-stage Alzheimer’s care is ensuring the person being cared for is sufficiently fed. Clearly, as a person becomes increasingly inactive, the amount of they food required is reduced. However, it’s still vital they are well sustained and get to enjoy their favourite meals as much as is possible.
During the later stages of Alzheimer’s, the following could be required to support healthy eating and drinking.
- The right posture – This is all about helping your loved one to sit in a position in which they’re able to easily digest food. It’s recommended that they sit upright for 30 minutes after meals, although this can be different depending on someone’s frailty.
- Tailored meals – With a live-in carer, meals can always be adapted to someone’s individual tastes. But at this stage of Alzheimer’s disease, they can be adapted to someone’s individual needs. Usually that means choosing softer foods that are easier to chew and swallow, as well as thickening liquid that may represent a choking risk. Sensory changes can also mean that certain foods may not taste the same.
- Support with eating – As well as specific meals, someone living with symptoms of advanced dementia are likely going to need a bit of help with feeding. This will generally be the encouragement of them to eat themselves. This can be done by putting a spoon into someone’s hand and then guiding it into their mouth. For those with more acute symptoms, this could be following each bite with fluids, reminding the person to chew and swallow, as well as making sure they’ve eaten everything.
- Promote hydration – Those with advanced dementia often will find it difficult to remember that they need to remain hydrated. This is of particular concern for the elderly, as they can become dehydrated more easily. They may also need someone there to ensure they’ve properly swallowed all of the fluid.
- Checking for weight loss – It’s not unusual for those in the later stages of advanced dementia to experience weight loss. However, this needs to be closely monitored to ensure it’s not a side effect of medication, or even a sign there’s something else wrong.
Diet and dementia
Getting the right balance of nutrients is really important for all elderly people, but particularly those living with dementia – with added complications around mealtimes, such as difficulty feeding.
In the later stages of neurological degeneration, trouble toileting is likely to become an increasing problem. This is for a variety of reasons.
It may be that mobility issues prevent someone from reaching the loo in time. It might be because sensual impairment stops someone from being able to feel they need to go. For some, it’s not being able to communicate to a carer that they need the toilet. And for others, issues with orientation can mean they’re unaware of where the toilet is.
- Tracking toileting – Sometimes, it might be useful for a carer to keep a written log of the intervals between toilet breaks. This can help them monitor and adjust to the person receiving care’s individual habits and needs.
- Administering laxatives – As constipation is both uncomfortable and a cause of incontinence, a carer may decide to monitor bowel movements and administer laxatives as appropriate.
- Checking fluids – As has already been noted, staying hydrated is more important for the elderly. However, it’s important for a carer to ensure fluids are being consumed at the right time of day. Too much to drink before bed can increase the risk of bladder incontinence at bed time.
- Apply incontinence protection – Senior incontinence pads or a bedpan can help make nighttime incontinence a little easier. The carer will replace them when required to ensure your loved one is clean and comfortable.
What causes of incontinence for those with Alzheimer’s?
Although those with advanced Alzheimer’s are more likely to face continence issues, they’re quite common among elderly people without the disease. Here are some other potential causes:
- Urinary tract infection — an infection around the bladder which can create a very immediate, uncontrollable urge to urinate.
- Medication side effects — medication affects people differently. If you suspect it’s causing incontinence, contact your GP.
- Constipation — when constipation eases, it can cause uncontrollable faecal incontinence.
Bone and skin health
The less mobile a person with late-stage Alzheimer’s becomes, the increased likelihood that they’ll be bed or chair-bound. This can have significant implications for someone’s skin and bone health. Problems such as pressure sores, frozen joints and the deterioration of the skin are all fairly common for those living with Alzheimer’s.
If these aren’t kept on top of, they can lead to a serious deterioration in someone’s health. Luckily, a carer is able to spot the signs and help relieve some of these symptoms. Here’s some of the things they can do:
- Reducing spot pressure – When a person remains in the same position for a long period of time, the pressure on a weakened body can restrict circulation. A carer is able to move someone’s position at regular enough intervals to stop this from happening, making them comfortable in a new position with pillows and supports.
- Gentle cleaning – The skin of an elderly person in the later stages of Alzheimer’s disease may tear more easily than before. This requires a more gentle approach to hygiene. The person receiving care should be treated more delicately and milder soaps should be used. The carer can also use it as an opportunity to check for rashes and sores.
- Handling with care – With frail bones and the aforementioned risk of skin tears, ease of injury is increased. This is especially true when it comes to moving someone from one position or place to another. A carer should have a good understanding of the best practices when it comes to ensuring risk of injury is reduced.
Helping to prevent infections
Staying in a sedentary position increases the likelihood of contracting pneumonia and the flu. Reducing risk is about taking a more holistic approach to avoiding infection.
- Oral health – Keeping the teeth and mouth of someone living with late-stage Alzheimer’s clean is essential to help prevent infection. That means after every meal. And, because teeth can be more brittle with age, a softer, less abrasive toothbrush is ideal. Gum health is equally important.
- Dressing wounds – When someone is frail, small cuts are a likely occurrence. A carer is able to identify, clean and cover minor cuts, applying antibacterial creams, such as Savlon, as appropriate. Although, if these are deep, medical attention should be sought and it’s likely an ambulance should be called.
Making life more comfortable
As people in the later stages are more prone to infection, bumps and cuts, they may occasionally feel in pain. However, this can be an issue if they’re unable to communicate that this is the case. It takes a carer with experience to understand when a person is feeling pain. They can do this by:
- Recognising changing moods – Although it might not be easy for someone to let a carer know they’re feeling discomfort, a change in mood or behaviour could be a sign. A live-in carer may look for signs of a person becoming increasingly agitated, anxious, or even aggressive. Difficulty keeping a regular sleeping pattern can also be a sign of changes in mood.
- Recognising physical distress – Someone doesn’t have to actively tell you they’re in pain to communicate they’re in distress. Tell tale signs include pale skin and gums, shaking, and throwing up.
- Recognising ‘nonverbal’ signs – Other ways someone may indicate they’re in pain include warnings such as pained — or wincing — facial expressions, screeches and screams.
Palliative Alzheimer’s care
‘Palliative’ can be a bit of a confusing word. In short, it just means support for someone with a terminal illness. It’s a necessary step for someone with Alzheimer’s when symptoms have begun to deteriorate to the point in which they can no longer cope alone.
Palliative care may be needed for a few weeks, months or years. There are no limits. It’s all about ensuring anyone with a terminal condition is able to live out the rest of the time they have left with dignity, without discomfort or distress.
Usually, we find it’s best for families to choose a live-in carer with palliative experience when they know a loved one is facing a life-limiting condition.
For Alzheimer’s, this would be in the middle stages. As continuity is crucial, it can really bring that additional peace of mind to know you’ve someone the whole family will get used to and trust.
End of life care
This differs from palliative care because it’s focused on those very final stages of someone’s life. It’s usually additional to any long-term support you may have put in place from a live-in carer.
Realistically, this is something families will only consider in the final weeks and months of someone’s life. With that in mind, it’s about helping someone pass away in a peaceful and dignified way, in as much comfort as possible and those they love around them.
It’s at this point that any advance decisions and advance statements relating to someone’s later moments will be taken into account.
Discover more of our articles on dementia
From dealing with a diagnosis and understanding the implications to getting advice on how to live well with the condition, our extensive resources will help guide you through what can be a tough and emotional moment.