Cognitive Impairment and Dementia: A Practical Guide to Daily Living for Family Caregivers Compiled by Suzanne Cahill PhD & Vanessa Moore In association with The Living with Dementia (LiD) Programme, School of Social Work and Social Policy, Trinity College Dublin and the Dementia Services Information and Development Centre (DSIDC), St James’ Hospital, Dublin. Introduction: This booklet has been written to provide practical information to family care- givers of people living at home with a cognitive impairment or a dementia and to help them better cope with the day-to-day choices and dilemmas they may confront. When you are caring for a person diagnosed with dementia or a cognitive impairment, sometimes the home and negotiating its surroundings can pose difficulties and can be dangerous. Yet without much effort, your home and its surroundings can be adapted to make it safer for everyone. D etailed in this booklet are simple suggestions about changes/adaptations that can be made which may make daily life at home safer and more simple for you and your relative. Remember not all of these suggestions will apply to you, nor are they foolproof. They are merely tips and do not and will not work for everyone. They may however help some people overcome the early practical difficulties that living with a cognitive impairment or dementia creates. Remember too that if any of these issues become extremely problematic, Health Service Professionals are available who have the specialist skills needed to assist and advise you in more depth. 2 Contents: The booklet covers strategies to compensate for the disability of dementia, such as: Adapting the house inside including appropriate signage p.4-5 Using appropriate lighting p. 6 Providing aids for time and place orientation p. 6 Adapting the kitchen p. 7 Changing the bedroom p. 8 Using appropriate clothing and dressing p. 9 Altering the bathroom p.10 Avoiding getting lost outside the home p.11 Adapting the garden and pavement p.12-13 Changing smoking habits including quitting smoking p.14 Consuming alcohol safely p.14 Promoting regular timely medication use p.15 Advice on driving p.16-17 Advice on money matters p.18 Summary p.19 Using relevant contacts and stockists p.20 3 Promoting Safety and Security at Home: Sim ple and subtle changes may make the home environment safer for everyone. Try to reduce clutter around the rooms in the house, in the hallway and on the landing upstairs. It may be necessary to remove certain objects if causing problems, such as matches, lighters, detergents, irons, medicines, alcohol, knives, scissors, gardening equipment and any other items which may pose a hazard. Make sure no electrical wires are loose or poorly attached. Make sure furniture particularly chairs are sturdy and not blocking access to other rooms and areas. Remove unnecessary furniture, or replace old pieces with more practical furniture. Change or remove rugs if they are likely to cause your relative to trip. Do not wax the floor. Make sure steps and stairs are clearly marked and non-slip. If your relative is prone to falls, consider installing an extra stair rail. Avoid sharp differences in the colour of the floors, especially dark colours – people with a cognitive impairment or dementia sometimes view dark patches or particular designs on the floor as obstacles and may try to jump over them. 4 Promoting Safety and Security at Home: Due to perceptual problems, people with a cognitive impairment or a dementia can sometimes get lost inside their own homes and may have difficulty distinguishing one room from another. They may also have difficulty differentiating appliances and equipment within rooms. Some simple approaches can be introduced which may prevent people feeling lost or confused inside their own homes. Inside the house, place clear and visible written signs or pictures at eye level at the entrance to each room, to remind the person what room he/she is in, or what should be done in this room - for example: A picture of a toilet outside the bathroom/toilet, or keys beside the front door. Keep the home environment consistent and predictable and in particular try to ensure that furniture stays in the same place – the fewer changes made the better. To reinforce self-identity, place large pictures of family members and friends around the house, complete with nametags. Attach a sticker (where possible) to appliances such as the toaster or coffee maker describing what the appliance does and put notices on doors and cupboards as a reminder of what is inside the cupboards/behind doors. Clear and simple instructions on how different kitchen appliances work may help people with an early stage cognitive impairment, for example how to put the coffee maker or kettle on. This is only useful as long as the person can understand instructions. 5 Lighting in the home: Make sure the whole house is adequately lit and avoid floor or table lamps that can easily fall over and cause accidents. Reduce glare or reflections from windows that can cause further confusion or may be misunderstood. If mirrors create confusion or cause adverse reactions, cover them over or remove them completely. Keeping track of time: Have a large clock with big figures easy to see in a prominent position in the kitchen or breakfast room or in a room most often occupied. Have a large calendar visible in the same room. It may be helpful to cross out previous days so today‟s date is more obvious. You can also purchase clocks which show the date and day . A day or weekly planner filled out in advance can help structure the day. The planner can be used as a reminder of what day it is and what should be done on that particular day. A visitors book can jog one‟s memory about who has been visiting the house and when visits were made. 6 Promoting Safety in the Kitchen: Regardless of whether a person with a cognitive impairment or dementia can cook independently or not, the kitchen including its appliances and equipment, can sometimes pose safety problems. Here are a few simple tips that may assist in overcoming some of these problems: Keep a regular check on the fridge to ensure foods (particularly meat, cheese and eggs) and drinks (particularly milk/cream) are not out of date or decaying. It may be helpful to use different colours on the kitchen table, for example white plates against a red tablecloth. Be conscious of the fact that a person with a significant cognitive impairment may not be able to distinguish hot from cold and can therefore get burnt on food or drinks. When needed, install timers to control electrical outlets or stove, coffee maker and other appliances. Remove all sharp objects, chemicals/detergents, dishwashing liquids/tablets if they cause a problem. If possible, control the water temperature in the boiler to avoid the risk of scalding or burning. If needed, install tamperproof locks on stove/oven. If fiddling with gadgets becomes a problem, arrange to have stove knobs and oven door handles removed or alternatively use gas or electrical isolator switches that are concealed or awkward to access. Smoke alarms and gas detectors are also useful. Ensure your relative can boil water safely. A kettle is usually the best option. Swallowing may be problematic for a person with a more advanced cognitive impairment. Where this is a problem, try to remain present when a person is eating. It may also be useful to cut food into small pieces or if necessary and particularly in the case of advanced cognitive impairment, it may be advisable to prepare food in liquid form. You may also find it helpful to make an appointment to meet with a Dietician or Speech and Language Therapist. These Health Service Professionals are specially skilled in assisting you deal with dietary and swallowing difficulties. 7 The Bedroom: People with a cognitive impairment or dementia may experience a change in their sleeping patterns. Their Circadian Rhythms may be impaired and they may mix up day and night and wish to get up during the night, thinking it is daytime. Bedrooms should as far as possible remind people that they are peaceful places for rest and sleep. They can be nicely adapted to foster comfort, relaxation and calmness. A balance of colour in the bedroom is useful to ensure it remains interesting yet does not prevent sensory deprivation. Avoid using garish colours such as reds or purples which may over-stimulate. A mix of contrasting colours in the decoration of the bedroom creates visual enjoyment, as well as reinforcing the identity of a particular room. Ensure lights are bright enough to illuminate the room clearly; however avoid lights that produce glare or shadows. Night-lights may be helpful for a person prone to getting up at night and can be used to illuminate clear pathways to the bathroom making it safer and faster to access. A bed occupancy sensor can alert you to when the person has left bed and the length of time he/she has gone (See links on backpage for stockists). Try to ensure the temperature in the bedroom is suitable for persons with a cognitive impairment who may be unable to communicate their feeling too hot or too cold. People with a cognitive impairment are sensitive to temperature changes and drafts. Keep a large clock and a calendar visible in the bedroom so the person always knows what day/time it is. In the bedroom avoid loose mats or inappropriately placed furniture which may cause accidents 8 Appropriate Clothing and Dressing: If dressing becomes problematic, try to use clothes that do not restrict mobility and are easy to put on. For example, stretchy, elasticated clothing without buttons or fastenings, may be helpful. If tying shoelaces is difficult, it may be helpful to consider buying slip-on or velcro fastening shoes. Use indoor-shoes or socks with rubber soles to avoid slipping. Shoes that have a low/no heel are useful if your relative is unsteady on his or her feet. Leave clothes out in the correct order for dressing. If you have any doubts please consult an Occupational Therapist. 9 The Bathroom: The bathroom is an essential room at home for all of us. When a person acquires a cognitive impairment, the bathroom can sometimes be avoided as it may be frightening and may pose serious threats. You may need to consult an Occupational Therapist for more specialist information and advice about bathroom adaptation but in the meantime, here are a few simple suggestions that may be useful and may encourage people to use the bathroom more often: Try to make the bathroom warmer and more comfortable by turning up the heating in winter time or by placing a battery operated radio or tape recorder on a shelf with favourite music playing. If your relative is unsteady on his or her feet, a properly installed shower chair in the shower (provided the area is sufficiently large) reduces risks of falls. It may be helpful to remove stoppers from the sink and bath to avoid flooding. Remove all electrical appliances that could be dangerous if dropped in water. Remove all medications from the bathroom cabinet. To avoid scalding, mark hot/cold water taps with large letters. Magiplugs can be used to prevent overfilling of the bath. (see back page for stockists) Properly designed grab rails can be installed near the toilet and bath/shower to assist getting on/off the toilet and getting in/out of the bath or shower. If possible, add a shelving unit behind the toilet to display toilet paper, towels and other useful items. It may be advisable for security purposes to remove the bathroom lock or have one that is easy to open from the outside on the bathroom door. If changes are being made to the bathroom, remember to try to keep the original taps and the toilet–flush handle, since they will already be familiar to your relative. 10