This Booklet Includes Sections On:
- Understanding the persons diagnosis
- Taking on the caring role
- Looking ahead: putting plans in place
- Understanding and supporting the person with dementia
- Services, support and housing
- Supporting a person in the later stages of dementia
- End of life care and support
- Alzheimers Society services and support
- Other useful organisations
Helping Someone With Everyday Tasks
In the early stages of dementia, many people are able to enjoy life in the same way as before their diagnosis.
But as symptoms get worse, the person may feel anxious, stressed and scared at not being able to remember things, follow conversations or concentrate.
It’s important to support the person to maintain skills, abilities and an active social life. This can also help how they feel about themselves.
For All The Stress There Are Good Moments Too
Darby Beach said there are also a lot of good things that come out of being a carer. There is a great deal of stress that comes with the territory, but there will be moments where they’re thankful they’re around.
For example, carers can also stimulate old memories and conversations with their loved one by bringing props that remind the person with dementia of their past. Someone who used to love cooking might not be able to eat solid food anymore, but they still have a sense of smell, so you could bake some bread. Or someone who used to love riding horses might like to see a saddle and talk about what it was like.
“Something like that can remind them of that interest … and spur those memories and that connection,” said Darby Beach.
“It’s what’s called person-centered care, and that really means knowing that person. The more that we know about somebody, the more information we have to be able to validate that person’s and redirect them… So they’re not all bad moments.”
She added that she’s seen families grow closer because of the time they spend together as carers.
“It’s tough but there are also a lot of good things that come out of it,” she said. “They do have that sense of satisfaction that they really were there to the end and helped their loved one, and they get closer. So they’re not all bad moments.”
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Get A Carer’s Assessment
If you care for someone, you can have an assessment to see what might help make your life easier. This is called a carer’s assessment.
A carer’s assessment might recommend things like:
- someone to take over caring so you can take a break
- training in how to lift safely
- help with housework and shopping
- putting you in touch with local support groups so you have people to talk to
A carer’s assessment is free and anyone over 18 can ask for one.
Tips For Everyday Care For People With Dementia
Early on in Alzheimers and related dementias, people experience changes in thinking, remembering, and reasoning in a way that affects daily life and activities. Eventually, people with these diseases will need more help with simple, everyday tasks. This may include bathing, grooming, and dressing. It may be upsetting to the person to need help with such personal activities. Here are a few tips to consider early on and as the disease progresses:
- Try to keep a routine, such as bathing, dressing, and eating at the same time each day.
- Help the person write down to-do lists, appointments, and events in a notebook or calendar.
- Plan activities that the person enjoys and try to do them at the same time each day.
- Consider a system or reminders for helping those who must take medications regularly.
- When dressing or bathing, allow the person to do as much as possible.
- Buy loose-fitting, comfortable, easy-to-use clothing, such as clothes with elastic waistbands, fabric fasteners, or large zipper pulls instead of shoelaces, buttons, or buckles.
- Use a sturdy shower chair to support a person who is unsteady and to prevent falls. You can buy shower chairs at drug stores and medical supply stores.
- Be gentle and respectful. Tell the person what you are going to do, step by step while you help them bathe or get dressed.
- Serve meals in a consistent, familiar place and give the person enough time to eat.
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Ten Tips For Communicating With A Person With Dementia
We arenât born knowing how to communicate with a person with dementiaâbut we can learn. Improving your communication skills will help make caregiving less stressful and will likely improve the quality of your relationship with your loved one. Good communication skills will also enhance your ability to handle the difficult behavior you may encounter as you care for a person with a dementing illness.
Dealing With Difficult Emotions
One of the most difficult things about caring for a person with dementia can be the range of emotions you experience. You may feel frustrated, exhausted or burnt out. You may be angry and wonder, Why me? You might also feel isolated and cut off from the world. It is common for a carer to feel lonely, especially as your relationship with the person with dementia changes. There may be times when you worry that you are only caring for them out of a sense of duty. Or you may feel you no longer love or even like the person you are caring for. You might also feel grief like you are losing the person you once knew.
Everyone will experience caring in their own way. There may be days when you feel you can cope well and other days when you feel that you cant. There may be some parts of caring that you find easy to manage but other things that you find difficult. This can change from day to day, which can also be very challenging.
These are all very common reactions to caring for a person with dementia. Many other carers will be feeling the same emotions and its very important not to be ashamed about how you feel.
Feeling guilty
Some emotions you may experience will be normal responses to the situation, such as frustration. Other emotions can be more difficult to deal with and could leave you feeling powerless or stuck.
One emotion that can be particularly hard to deal with is guilt. You may feel guilty for a number of reasons. For example:
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Assemble Their Medical Team And Map Out What Their Ongoing Medical Care Will Look Like
A diagnosis of Alzheimers disease will involve use of medications, scheduled and consistent visits with physiciansideally including a dedicated memory specialistand frequent re-evaluation of medical, physical, and psychosocial needs, Dr. Porter explains.
Someone with Alzheimers may work with experts of the following medical specialities:
- A geriatrician, who is a medical doctor who works with older adults
- A geriatric psychiatrist or psychologist, who specializes in mental and emotional problems of older adults who have problems with memory and thinking, and/or in the mental health needs of the elderly and their families
- A neurologist, a physician who focuses on abnormalities of the brain and central nervous system and can conduct in-depth neurological evaluations and provide specific diagnoses of cognitive disorders
- A neuropsychologist, who can perform tests of memory and thinking to determine a persons specific impairments and how they may impact daily functioning
You may not need to or choose to work with all of these types of medical providers, but it can be helpful to have a few names of experts youre interested in working with from various fields ready as the persons condition shifts or progresses.
Communicate Patiently Slowly And Clearly
Use physical touch to help communicate. For instance, if a person with dementia is having a hallucination, a gentle pat from you might draw them back to reality and out of their frightening hallucination.4 Sometimes holding hands, touching, hugging, and praise will get the person to respond when all else fails.
Communication or more specifically failed communication can be the crux of problems for many caregivers. Weve whittled it down to some of the key aspects that you could focus on to make it easy for you and the person with dementia:5
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The Three Stages Of Dementia
After dementia is diagnosed, it usually follows a three-stage, downward trajectory.
In mild dementia, people may have difficulty remembering words and names, learning and remembering new information, and planning and managing complicated activities such as driving. They may also be experiencing sadness, anxiety, loss of interest in once pleasurable activities, and other symptoms of major depression.
In moderate dementia, judgment, physical function, and sensory processing are typically affected. This can cause problems with personal hygiene, inappropriate language, and wandering. This stage — when your loved one is able to get around but has poor judgment — is physically and emotionally challenging for the caregiver.
“My dad went from being Mr. Nice Guy to Mr. Obsessed. And things were always worse at night. He was energized and I was physically exhausted,” says Robert Matsuda, a Los Angeles musician who worked full-time and cared for his father with Alzheimer’s Disease for three years before recently placing him in a nursing home.
As a patient moves from mild to moderate dementia, some home modifications that may include removal of throw rugs, installation of locks and safety latches, and the addition of a commode in the bedroom often need to be made.
This is also the time when the palliative care team should be brought in to support the caregiver and help manage behaviors.
Find Engaging Activities And Encourage Socialization
Incorporate activities and hobbies that match your loved ones interests and abilities into their daily care plan. Building on current skills generally works better than trying to teach something new.
- Help the person get started and break activities down into small steps.
- Watch for signs of agitation or frustration. If they become irritated, gently help or redirect their attention to something else.
- To help maintain functional skills, enhance feelings of personal control and make good use of time, try to include them in an entire activity process. For instance, at mealtimes, encourage the person to play a role in helping prepare the food, set the table and clean up afterwards.
- Take advantage of adult day care services for Alzheimers patients, which provide various activities and social opportunities for seniors as well as respite time for caregivers.
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Learn About Burnout In Alzheimers Caregivers
Dementia care is incredibly demanding and emotionally challenging. Deciding to care for a loved one with Alzheimers at home is a huge decision that affects all aspects of a family caregivers life. Taking steps to prioritize self-care is crucial for your well-being and that of your care recipient.
Learn How To Be A Caregiver
It may sound obvious, but seek out information about Alzheimers disease, what types of behaviors to expect, and strategies that are recommended for specific challenges you might face. Organizations, including the Family Caregiver Alliance and the Alzheimers Association, have extensive information published online about Alzheimers disease and tips for caregivers.
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There Are Good Moments Too Ocskay Mark / Shutterstock
Caring for someone with dementia is tough. If the carer is someone close, they may feel like the person they loved is being washed away and replaced by someone they don’t recognise. Their world also gets smaller and smaller as they realise they don’t have time for everything they used to before becoming a carer.
It’s also like going through grief, as the person they care for slips away. As their loved one deteriorates and they start to lose their abilities, the caregiver is simultaneously caring for them and battling their own sadness that they aren’t fully there anymore.
“The person eventually becomes a shell of who they were,” said Darby Beach. “They are there in body, but the relationship is gone, the memories are gone, and that’s hard on caregivers.”
She said it’s really important for carers to take care of themselves first. In her work, and from personal experience, she knows how draining it can be to care for someone else full time. And there’s no way you can do that properly if you’re completely burnt out.
She said it’s like when flight attendants are reading out the safety instructions on a plane, and they tell you to put on your own oxygen mask before helping anyone else. Carers are likely to feel guilty if they make time for themselves and leave their loved one with someone else for a few hours. But ultimately it’s just one of the rollercoaster of emotions they’ll feel, and it’s better to minimise them wherever they can.
Caring For People With Dementia At Home
- Our relationship-centred approach enables our CAREGivers to provide personalised care that:
- Helps your loved one remain safe at home
- Builds confidence and encourages engagement
- Can provide nutritious meals and mealtime activities to encourage healthy eating
- Creates opportunities for social interaction
- Provides stimulating activities
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Should You Keep Trying To Communicate
Family members may frequently ask, How often should I visit?, or, Should I visit at all, because they dont seem to be understanding what were saying, most of the time they dont seem to recognize me, etc. Caregivers can encourage family members to visit because its important to them. Also, the person with memory loss may catch some things on some days, and if family members can make the interaction a pleasant moment, it can be rewarding for both.
Communication amongst family becomes particularly difficult when the person with dementia and/or Alzheimers doesn’t recognize family members anymore. In this situation, a spouse or children can think that it doesnt do any good to go talk to the personthat anyone could talk to him/her because they dont remember who they are. But there is a richness that happens because of family history together, something that can only come from people that have been family or friends for a long time.
The type of communication families can get out of visits can be pulled from the strength of the patient and/or loved ones long-term memories. They can still talk about the past, and for family members, to hear those things are perhaps a worthwhile gift.
Even though the patient and/or loved one can no longer communicate the way they used to, there are still other ways to enjoy time together. There is beauty and simplicity in being in the present moment.
Small Changes Can Make A Big Difference
Sometimes dementia doesn’t impair someone’s memory and functions until it’s very advanced but it does affect vision. Laura Phipps, the head of communications and engagement at Alzheimer’s Research UK told Business Insider that some types of dementia only affect sight and perception, which is the type English author Terry Pratchett had.
“One thing people often tell us about is that puddles on the ground can look like holes because there are issues with… depth perception and colour perception,” said Phipps. “You know when you go into a shop and they… have those big black mats in front of the door… for some people with dementia that looks like a massive abyss.”
In this situation, reframing their environment may be as simple as going to a store that doesn’t have those kind of mats. Phipps said a lot of the time, people with dementia can’t make the judgement because their brain isn’t working at 100%.
“There are big impacts on how people can live but people don’t realise them,” she said. “It may just be a really small thing that causes someone to be anxious, but if they can’t articulate that you can’t change it.”
That’s why there’s a big movement for understanding why people with dementia are acting aggressive or agitated. There’s a good chance it’s something to do with their environment the lighting, the way shadows are cast, or the floor that could be causing their anxiety.
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When Should I Ask For Support
Supporting people with dementia at the end of their life requires a team approach. Often, there will be many people involved in the persons care at the end of their life. Good communication and information sharing helps to ensure the person receives the care they need.
If youre unsure about anything or have any concerns seek advice from a colleague, manager or another health care professional.
There may be certain professionals who can advise on specific issues. These may include a GP, district nurses, social workers, other care staff and specialists.