NHS Forth Valley – Living Well at Home

Hints and Tips for Living Well at Home with Dementia

When a family member receives a diagnosis of dementia it can be overwhelming. However, it can also give a sense of relief, helping you and the person understand the changes that were going on prior to diagnosis.

There are many different types of dementia, affecting people of varying ages. A dementia diagnosis can affect how people function on a day to day basis.

This page focuses on possible practical strategies to help the person living with dementia cope well at home. We signpost you to local resources in Forth Valley that maybe useful, more detail can be found in the contacts page at the end of this booklet. However, remember what works for one person doesn’t always work for another.

This page is designed to be read in sections. Do not feel like you have to read it all at once.

We would like to thank the Community Occupational Therapists in West Lothian Council for sharing their “Living Well at Home with Dementia” publication, which modelled and inspired this information.

Home Life & Accessibility

Does the person have difficulty getting in/out of the house?

Ensure doorways, paths and porches are well lit, free from obstruction and well maintained to help avoid trips and falls.
External hand/grab rails may be something to consider if difficulties arise getting in/out of the house. Contact your local social work department (Social Work Department) to discuss an assessment.

Does the person have difficulty opening or answering the door?

If the person living with dementia is struggling to hear the doorbell, consider contacting Forth Valley Sensory Centre, where people with a visual or hearing loss and their families can access quality services and advice. Also consider Action on Hearing Loss for some ideas on louder ringing or flashing doorbells.
If the person wears a hearing aid, is it working? Ensure the person has a supply of batteries and it is regularly cleaned, and tubing replaced. Consider referral to audiology if you have any concerns regarding the hearing aid.
A wall mounted key safe can be installed outside the property which can store a spare key. You can choose to give the unique code to those who need access to the house. These products are available privately.
A Cold Caller Sticker from your Local Council can prevent unwanted callers.
A sign on the inside of the door can remind the person living with dementia not to allow entry to unknown visitors.

Has the person living with dementia ever lost their way when out or when coming home?

Encourage the person to carry a mobile phone that they understand how to use.
Consider keeping a card in a wallet/purse with the person’s name and emergency contact details on it. Ready-made cards are available from Alzheimer Scotland.
Consider inquiring about the Mobile Emergency Care Service (MECS). Door sensors which can be used to alert carers and family if the person opens the door to leave the house.
GPS Devices which can help locate a person’s whereabouts may be useful. This allows the person to still get out and about while being as safe as possible.
Think about downloading the Purple Alert Alzheimer’s Scotland app, which is a community app that may help find a person with dementia if they go missing.
Consider completing The Herbert Protocol. This is an information gathering tool that will assist the police find a person if they go missing.

Do you have any safety concerns about the person with dementia when crossing the road?

People who pose a risk to themselves or others in traffic because of a mental health condition such as dementia, may be eligible for a specific Blue Badge. You should apply using the “risk in traffic” application form. This could help with parking closer to the supermarket or clinics entrance.

Information and how to apply can be found on the council websites for Clackmannanshire, Stirling & Falkirk areas.

A health or social care professional will be required to support your application.

Getting around The House

Can the person get around the house safely?

Remove any trip hazards such as phone or television cables, rugs and clutter. Ensure flooring is in good condition and thresholds are even.
Heavily patterned flooring can be mistaken for objects on the ground. Dark areas on a carpet may be perceived as black holes to someone living with dementia. This may confuse and increase falls risk. Solid colour, plain flooring is preferable.
Ensure there is adequate lighting as shadows can look like a change in floor level or step. Install additional strip lighting, sensor lighting, or night lights. Older adults require twice as much lighting as normal standards recommend.
Are there banisters on both sides of the stairs? Consider additional banisters to reduce risks and provide extra support. (Contact your local Social Work Department to discuss).
If the person is unsteady or has poor balance while walking, a physiotherapy assessment may be helpful
and can be accessed via GP.
Mobile Emergency Community Service (MECS) can provide a range of equipment such as falls alarms and mats. This means you can call for emergency help when you need it. There is a small charge for some services. Alarms can be worn as a neck or wrist pendant as shown in the image above.

Is the person orientated to the rooms in their house?

Use signage to help people find their way around their home. Signs with pictures/photographs and words can help the person orientate themselves.
Consider using yellow background on sign to provide a contrasting colour to the wording.
Use lower case rather than capital letters e.g. Toilet not TOILET.
Ensure the sign has enough contrast to see. Don’t put too high as people tend to look down as they get older.

Is the persons feet in good condition?

NHS Forth Valley Podiatry Department is a medical service which manages problems that occur in the foot and lower limb. The Podiatry Service in NHS Forth Valley provide assessment, diagnosis, treatment and foot health education to patients with a foot complaint or systemic condition that adversely affects the foot and lower limb. Contact your GP for referral.
“Top Toes” is a volunteer run service, trained by NHS Forth Valley staff to cut toenails every 8-10 weeks for a small charge. Ensure good foot care – healthy feet can help people remain physically active and improve quality of life, therefore it is important to look after your feet and keep toenails at a comfortable length.
Consider footwear that is properly fitting, fastens securely, supportive, sturdy and has non-slip soles.

Has the person had a recent eye test?

Dementia and sight loss are both more common as you get older. People living with dementia can also have visual difficulties because dementia can affect the parts of their brain that handle visual information coming from the eyes.
Having regular eye tests and ensuring that glasses are current and clean is important. Have a spare pair in case of misplacing.
Some companies offer a home testing service.

The Living Room

Does the person have difficulties using the TV?

If using the TV becomes more difficult, consider writing down simple instructions and leave it next to the TV remote. Alternatively, you can purchase an “easy to use” remote control which has large colour-coded tactile buttons for easy or simplified use.
Try not to make any big changes. Keep any new electrical appliances similar to what is there before.
The person with dementia has to work harder to process information so when having a conversation, switch the TV off to minimise distractions.

Is the house warm enough?

Can the person with dementia turn the heating on/off? Some companies allow you to control the heating from your phone.
Does the heating control system require to be in a locked in switch box to prevent the person switching them off.
Make sure your heating appliances are serviced regularly.
Speak to your energy supplier/Age Concern/local council to gain further information about the services that can be provided to people living with dementia.

Does the person have difficulties using the telephone?

Is the ringer volume loud enough for the person to hear and does it ring long enough to allow the person to answer?
Would a visual prompt, like a flashing light help the person recognise the phone is ringing. See the RNIB for information on phones or consider The Sensory Centre, Falkirk.
Consideraneasierusephonewithlessbuttonsor something like a more traditional telephone.
Is the person receiving a lot of nuisance calls? Consider speaking to your provider to discuss call blocking options or contact Trading Standards for more information. Products can be purchased to prevent unwanted callers.
Encourage the person to write down phone conversations by leaving pen and paper beside the phone. This will help them recall the conversation later.
Add frequently used numbers to the phones directory or have a list of numbers beside the phone to remind them of frequently used numbers such a family or the GP.

Is the seating suitable for the person?

Is the person is having difficulty getting on/off their chair? The person’s feet should be flat on the floor. Having 2 arm rests can help with getting on and off the chair more easily.
Have a look at “Living Well Falkirk” website for some more ideas about equipment that matches your needs or consider contacting your local Social Work Department for further advice.

The Bathroom

Is the person experiencing difficulties washing, dressing or shaving?

Consider setting a shower/bath day to help with a consistent daily routine. If the person doesn’t wish a shower/bath, a thorough body wash at the sink is fine.
Set up the shower/bath – have the shower running/bath run, with towels/soap/products the patient is familiar with. Allow plenty of time to support the person to attend to personal care and talk the process through to ensure they understand your support.
Use a red/blue stickers/LED lights to help differentiate hot/cold taps.
At times people living with dementia can dislike or feel frightened by water coming down on their head. Bring the shower down and use across the body initially.
Consider a regular hairdresser appointment with a familiar hairdresser which can make this a pleasant social experience or using ‘shampoo caps’ which don’t involve using water at all.
Mirrors can cause distress for people living with dementia as at times the person may not recognise themselves or misinterpret reflections, Consider removing/covering the mirrors if this happens.
Contact your local Social Work Department and ask for Occupational Therapy to assess for aids and adaptations within the bathroom that may be beneficial.
Consider purchasing flood detectors and temperature sensors to support safe bathing.

Is the person managing their oral care?

For those with dementia, it is important to continue to take good care of the persons’ teeth and mouth, so regular check-ups and appointments with your dentist should continue. If you are unable to attend your own Dental Practice, speak with your dentist to discuss a home visit and possible referral to the Public Dental Service if appropriate. If you are not registered with a dentist, please contact NHS Inform. The Oral Health Team can also provide home visits to advise on hints and techniques if the person is having difficulty maintaining good oral hygiene.

Using The Toilet

Can the person easily find and use the bathroom/toilet?

People living with dementia can experience visual changes. Contrasting colours – using a bold coloured toilet seat can help the person see the toilet more clearly. For more information see virtual environment – Dementia Services Development Centre (DSDC) on the Stirling University website.
To help the person find the toilet, leave the bathroom door open so the toilet is easily visible, also consider signage.
At night, use strip/sensor lighting or a touch lamp that comes on if the person gets out of bed to help with orientation. In the dark, objects in the room may be misinterpreted by the person with dementia which can be distressing.
MECS can also support with floor mats which can indicate if the person gets out of bed.
If it is difficult getting to the toilet during the night, discuss with the Social Work Department a commode for the bedroom if necessary.
If there are issues with continence, discuss with the GP to rule out any medical issue such as infection. District Nurses can provide a continence assessment and can help with aids and advice to manage this.
A mattress or chair protector can be used and can be easily washed.
Consider gentle prompting if the person hasn’t used the toilet for a while, they perhaps aren’t sure where to go or are less aware they need to use the toilet. Refer to page 11 for using the toilet.

Can the person use the toilet safely?

Occupational Therapy services can assess for toileting equipment such as a raised toilet seat or grab rails to assist manage your bathroom needs. Contact your local Social Work Department.
The Social Work Department can assess for home care services to assist and manage with washing, dressing and toileting if the person needs a bit more help.

The Kitchen

Is the person still able to make a meal?

A person’s ability to initiate meal preparation can change, a gentle prompt to get the task started can be useful.
Check if food is being used and for out-of-date items.
Consider using pictures on cupboards of what’s inside to help with finding things, perhaps putting the most used items on thework surface so they are easy to find.
Regularly check that the person is still able to safely work all their kitchen appliances.
Provide simple written instructions.
Coloured or raised stickers can be used to mark devices such as the microwave or washing machine to support the person use the right setting.
Consider companies that provide readymade meals that can be delivered to the person’s home and/or a care package from the Social Work Department to support with meals.
MECS provide smoke and heat detectors so that assistance can be given should an alarm be activated.
Locked socket covers can prevent appliances being switched off, e.g., the fridge.
Consider disconnecting/isolating the cooker if the person can no longer operate it safely. Contact your energy provider to discuss. A microwave may be a safer option.

Is the person eating and drinking properly?

Eating and drinking is important for overall health. People with dementia may have a reduction in their appetite or change in taste e.g. to craving/preferring sweet foods, eating twice as much as may forget a meal has already been eaten.
Dehydration can be a common challenge caused by memory impairment – forgetting to eat and drink.
Provide prompts or ensure regular diet and fluid by leaving non- perishable food and drinks that the person can access during the day example – bottles of water near chair and fruit/savoury snack.
Describe to the person what food you are serving them.
Ensure the person can see what is on their plate. It’s important to have contrast between the food and plate. For example, Mashed potato on a white plate can be difficult to see.
Kitchen aids such as adapted cutlery and mugs are designed for those with a weak grip or limited range of movement. They can be used to encourage your loved one to eat and drink independently.
Consider the person’s likes/dislikes and foods from the past that may stimulate their appetite. Have a look at “Eating Well with Dementia – A Carer’s Guide”.
If the person is unable to go shopping could family or friends support with online shopping? In Stirling, Clackmannanshire and Falkirk an organisation called “Food Train” can assist with shopping as well as other support to live well at home.
Ask the person’s GP for a referral to the Dietician or Speech and Language Therapistifthepersonislosing weight or having difficulty swallowing.
Consider seeing the dentist if the person has a painful mouth or difficulty with their teeth/dentures. See “The Bathroom”.

The Bedroom

How is the person sleeping?

Try and create a routine and the right sleep environment. Minimising noise levels which can cause confusion/distraction. Keep the room at a comfortable temperature around 19°C. Darkening the room helps people understand it’s night time.
Sometimes a person may mistake the time and get up too early. Think about a bedside clock to orientate the person.
Keep the bedroom plain, including bed covers and curtains to reduce confusion from misinterpretation of patterns.
At night, use strip/sensor lighting or a touch lamp that comes on if the person gets out of bed to help with orientation
Is the person able to get in and out of bed safely? Contact Social Work Department for an assessment, there may be aids to help.
If a walking aid is used, make sure it is next to the bed so the person can safely move around during the night.
Could involvement in local groups or activities give the day more structure and help the person differentiate from day and night? See Alzheimer’s Scotland’s website or contact local social work department for further information.
If you are concerned about the person’s sleeping patterns and other strategies haven’t helped, contact your GP.

Is the person able to dress?

For example, do they; want to wear the same outfit every day, wear clothing that is not appropriate for the weather, put clothing on in the wrong order or become overwhelmed by too many choices of clothing?

Consider labelling drawers to help the person find clothing.
Lay out clothes in the order the person will put them on.
Choose clothing that is easy to put on and take off to facilitate independence.
If the person likes a particular outfit, buy a few of the same outfit.
Limit the number of choices and involve the person in choosing these clothes each day.
Allow enough time so the person does not feel rushed.
Remove soiled/dirty clothes at night to ensure clothing is changed regularly.

Stress & Distress

Dementia may have an impact on how a person behaves and feels. We call this Stress and Distress behaviour. Often a person living with dementia is trying to communicate a need which is unmet.

Try to remember that the person is not trying to be awkward but trying to tell you something. Behaviour changes can be due to a number of factors:

Pain/discomfort (caused by arthritis or problems with their teeth, too hot/cold).
A medical reason (depression or constipation).
A basic need (hunger or needing the toilet).
A feeling (anxiety or boredom, loneliness).
The person is having difficulty communicating their needs due to speech changes. Aids for communication may be offered to people with any form of aphasia or dysphasia, talk to your GP about a referral to Speech and Language Therapy.
Sensory changes (is the person too hot/cold? Is hearing loss a problem?).
The environment – is it too noisy or does their home feel unfamiliar?

Is there a sudden change in how the person is presenting? Think Delirium!

Delirium is a sudden change in a person’s mental state such as increased confusion, disorientation or extreme drowsiness. It can be caused by infections, medication, pain or dehydration. It can have a significant impact on the way a person behaves and functions, especially if they also have dementia. Delirium is a medical emergency. Contact the person’s GP for an urgent assessment and advice.

Other supports

The GP can also refer to the Dementia Outreach Team (DOT) which is a nurse led service, supported by a psychiatrist. The aim of this service is to provide intensive intervention to people who have a confirmed diagnosis of dementia and their carers when they are in, or at risk of, a crisis.
Considering contacting your local Dementia Advisor from Alzheimer Scotland who can provide information and advice, help you find the dementia support and connect you to local groups and services.
Look at Alzheimer Society website under “Changes in Behaviour” or the Living Well With Dementia NHS website for further information.
Have family pictures and personal items around the home that reflect the person’s meaningful life moments. This can be a great tool to engage the person living with dementia in conversation and reduce stress.

Medication Safety

Has the person living with dementia been taking medication they are prescribed?

Taking medication along with another task such as when having a meal can help with medication compliance.
Keeping medication in the same place can act as a prompt to take medication.
Consider using reminder products/mobile phone alarm to prompt tablet taking.
Consider a blister pack – these assist with keeping the person on track with the correct day and time for taking medication – blister packs have compartments or spaces for medicines to be taken. Discuss with your pharmacist about the availability and process of setting this up.
Consider a safe if the person with dementia is taking medication incorrectly. This can ensure medication is stored safely and accessed only when required.
Social work can assess for a possible care package to support with medication when it is in a blister pack.
Contact your GP if you have any concerns with medication management.

Fire Safety

Are there working smoke detectors in the house?

It can be useful to nominate someone to check these regularly.
A free Home Fire Safety Visit can be arranged from Fire Scotland. The service is happy to give you advice and tips about making your home fire safe. This can be done by completing an online form or contacting your local fire service.
See MECS discussed under “In the Kitchen” section for additional equipment to assist with fire safety.

Home Maintenance

“Care and Repair” in Falkirk aim to support home owners/private let tenants maintain, adapt, repair and improve their homes.
In Stirling “Housing and Alterations” can assist in a similar way.
Furthermore the “Handyman and Small Repairs Service” is available, for a charge to over 65’s who are disabled and live without an able-bodied person at home. They can support with some joinery and plumbing tasks for example.

Hints, Tips & Resources

Routines are important for someone with dementia

Good routines can stay with the person as their condition progresses.

Day to day activities – keeping people engaged in activities they enjoy such as, arts and crafts, community groups/activities or chatting to family and friends can help people remain positive and enhance self-esteem.
Sometimes people can struggle to initiate or complete activities. Giving some instruction and breaking activities into smaller steps may help. Start the activity with the person and ask them to join in. See “Ongoing Support” section who can advise on local community dementia groups.
Orientation clocks can give people a visual cue to help orientate to the day and time.
Calendars, diaries, white boards and communication books can be useful to write appointments/upcoming events. Having the day clock beside these aids can help the person to process the information together and assist with understanding.

Remembering where things are

Try putting things back in the same place, for example on a hook/ bowl for keys, a table/the mantelpiece for glasses or a purse.
Can regularly used items – glasses, TV remote – be left in the person’s sightline to help them find items?
Make a list of where you regularly keep things.
Label cupboards to tell you what’s inside drawers.

Hiding and hoarding

Hiding and hoarding may be an attempt by the person to have some control of their situation.

Consider a box or drawer where the person can put objects they want to keep safe.
Try to work out where the person hides things and check here first if something goes missing again.
Don’t leave important documents or items lying around. Keep a spare set of things that are often lost, such as keys.

Legal Issues

It is important to have an open discussion with the person about their feelings regarding finances and decisions around welfare/ health if a time came they are unable to do this for themselves.

Consider Power of Attorney (POA) –

POA is a written document that gives legal authority to someone appointed (a trusted family member or friend) to take actions or make decisions on behalf of another person if they are unable to do so.
No one has the automatic right (husbands, wives or children) to take actions on a person’s behalf without legal authority.
POA can only be completed if the person has capacity.

What would happen if the person did not have a POA in place?

The family or friends may have to go to court to be allowed to make decisions. POA can save your family/friends a lot of time and trouble.

Does the person have a Will?

A Will allows the person to choose what happens to your property and make decisions around gifts you wish to leave to loved ones.

Speak to a solicitor about the above documents. Solicitors for Older People Scotland are a group of Scottish Law firms dedicated to providing legal services to older people in a caring and sensitive way and give relevant information on your current situation. They can also check if you are entitled to ‘legal aid‘. Legal aid can be relatively generous to pensioners in Scotland, always ask for an assessment.

It may also be useful to request a “Handy Guides for Older People” from Solicitors for Older People Scotland that provides information on; legal aid, power of attorney, making your will, advance directives, care costs, trusts and equity release.

Ongoing Support

Carers Centres

An informal carer includes any person, who is giving regular, ongoing assistance to another person without payment.

Falkirk and Clackmannanshire Carers Centre and Stirling Carers Centre support carers by providing a range of free services including:

Advice, information, practical and emotional support.
WelfareBenefitchecks.
Help with forms.
Training.
1:1 support.
Peer support groups – for example Carer’s Cafe’s.

Carers Act (Scotland)(2016) gives carers the right to assessment of their needs to support them access services from their local council. An Adult Carer Support Plan will contain information about the carers circumstances, caring role, the nature and extent of care provided, emergency and future care planning and what is important and helps carers carry out their caring responsibilities.

Developed by local carers, Carers Centres, NHS Forth Valley and local authorities the Forth Valley Carers Card is an identification card that has been to ensure that carers are more easily identified by health and social care professionals and recognised and valued as equal partners in care.

The Carers Centre can support you to complete a free and confidential Welfare Benefit Check to ensure you have maximized the benefits that you are entitled to. It is important to remember that not all benefits are means tested.

If you feel you would benefit from any of the above, contact your local carers centre to discuss.

Dementia UK has a range of children’s books to help explain changes and presentation in dementia.

Dementia Link Worker Service

Everyone with a new diagnosis of dementia in Forth Valley should be offered the minimum one year’s post diagnostic support from a Dementia Link Worker. Referrals are usually arranged at time of diagnosis from The Community Mental Health Team.

The Link Worker can –

Help you to understand the illness and manage your symptoms support to you keep up community connections and make new ones.
Support you to meet other people with dementia and their partners and families – peer support.
Help to plan for future decision-making and your future support.
Please contact your local Alzheimer Scotland office to discuss referral.
National Dementia Carers Action Network (NDCAN) – a national campaigning network whose members have personal experience of caring for a person with dementia. Contact Alzheimer’s Scotland.
MECOPP (Minority Ethnic Carers of Older People) Carers Centre – help for minority ethnic carers to access support and services appropriate to their caring situation.
Please contact your local Alzheimer Scotland office to discuss referral.

Dementia Advisors are here to support people with dementia, their partners, families and carers, after the one year’s post diagnostic support. They will help you find the dementia support that you need and connect you to local groups and services within your community.

Clackmannanshire Council Countacts