How fear and lack of understanding of Alzheimer’s is stigmatising those who have it

How fear and lack of understanding of Alzheimer’s is stigmatising those who have it

Few of us will escape the impact of Alzheimer’s Disease. The grim pay-back from being healthy, wealthy or lucky enough to live into our late 80s and beyond is dementia. One in three – maybe even one in two of us – will then get dementia and forget almost everything we ever knew. And the lucky others? They will probably end up caring for someone with Alzheimer’s, the most common form of dementia. But it is far more than just a personal family tragedy. It is a major economic challenge to governments and health-care providers around the world, and will force some fundamental rethinking on how we care for sufferers. The costs are already immense. Dementia is now a trillion-dollar disease, and with the numbers of patients doubling every 20 years, the burden will fall unevenly on developing countries where the growth rate is fastest. In this first episode of the series, we explore how fear in some parts of the world is stigmatising those who have it, and denying help to those who need it. But also how to overcome the fear.

Watch the video here

Presenter: Andrew Bomford. Series Producer: Estelle Doyle

Source: BBC

Choosing a suitable home

Choosing a suitable home

This worksheet acts as a simple guideline for people considering admission to a retirement home or to a frail care centre for either themselves or someone they love and care for. Emphasis is on the practical considerations. You are, however, encouraged to look at the emotional implications of your decision and discuss these with someone you trust and can confide in.

It is important to ensure that the home is registered with the Department of Social Development, as registration is required in accordance with the Older Persons Act. The certificate of registration should be visible, displayed in a prominent place.

Of course, no home will meet all these requirements and deciding to enter or admit someone else to such a facility is one of the most difficult decisions one can be called on to make. At our regional offices and on our helpline we have staff and volunteers who can support you as you make this decision and any other important decisions that Alzheimer’s challenges us to make.

ACCESSIBILITY OF THE HOME

  • Is it close to family and friends?
  • Is it close enough to essential community activities e.g. church, shopping centre, hospital?
  • Is it in a familiar environment or a new area?
  • Will the resident be able to meet his/her spiritual needs at the home?
  • Is it a mixed-sex residence?

FIRST IMPRESSIONS

  • Is the property secure and are there visible security staff?
  • Can a resident wander around freely and can the resident leave the grounds undetected?
  • Is there a security system at the front door?
  • Is the home linked to an armed response company?
  • Friendliness of staff on your arrival
  • Is the interior clean and attractive, with functional and comfortable furniture and decorations?
  • Are there bad odours (especially urine)?
  • Do the residents appear clean and appropriately dressed for the weather?
  • Do the residents seem to be happy and occupied or are they sitting staring into space?
  • Did you see staff and residents sitting talking to each other?
  • Does the staff appear to be respectful and caring?
  • Are there any birds or animals? Are pets allowed to visit?
  • Noise – Are the sounds at a normal level and is there soft music playing?
  • Is there a lounge with television and one without?
  • Are there demarcated smoking and non-smoking areas?

FUNDING OF THE HOME

  • Who are the major funders of the home?
  • Is it a profit or non-profit organisation?
  • Is there any form of financial assistance if frail care is needed or additional care that the residents may not be able to afford?

FINANCES

  • Will you be able to afford the fees, possibly for an indefinite period?
  • What is the annual increase in fees?
  • If you have medical aid/disability cover/insurance, will it cover any of the costs?
  • Are there additional costs that are not part of the monthly rate?
  • How is ‘pocket money’ handled?

RULES AND REGULATIONS

  • Are the rules and regulations made for the benefit of the residents or are they regimented e.g. fixed bedtimes and strictly enforced visiting hours?
  • How much is the family involved in the individual managed care programme of the resident?

RESIDENTS’ RIGHTS

  • Is there a residents’ committee?
  • Are there channels for residents’ complaints?
  • What means of communication are available to the residents e.g. telephones, facsimiles, e-mail?
  • Is there privacy available for telephone calls?
  • Is there transport to a hospital, clinic, shops etc?
  • Are residents encouraged to remain physically and mentally active and to see to their own needs where possible and suitable?
  • Are residents allowed to assist in the chores/activities of the home?
  • Are residents called by name by the staff?
  • Do residents have a choice of food and quantity? Are second helpings allowed?
  • Are residents allowed to be sexually active?

BATHROOMS

  • Own or shared?
  • Bath and/or shower that has been adapted to the needs of the older person?
  • Is there easy access to the bathroom, for a wheelchair?

FOOD AND KITCHENS

  • Is the food of good quality and varied?
  • Is provision made for special diets e.g. diabetic, low fat, halaal, kosher etc?
  • Are the services of a dietician available?
  • Are desserts and fruit part of the regular menu?
  • Are there separate areas for food preparation, dishwashing and garbage disposal?
  • Are visitors allowed to have meals in the dining room and at what cost?
  • Are there ever any special meals e.g. Christmas, birthdays etc?
  • Are there regular teatimes, with tea supplied by the home? Is anything served with the tea?
  • At what times are the meals served?

GARDENS

  • Is the garden easily accessible and available to residents?
  • Are more active residents encouraged to assist in the garden?
  • Are there benches outside?
  • Is there a suitable safe path to walk on, in the garden?
  • Are frail residents helped to gain access to the garden?

VISITORS

  • Are residents allowed to go out for days/weekends and/or holidays?
  • Can visitors come and visit at any time or strictly only at visiting time?
  • Is there a private room for visitors?
  • Do visitors have to sign in on arrival?
  • Are relatives/friends encouraged to participate in the care of the resident?

STAFFING

  • There needs to be good staff-resident interaction
  • Are there enough caregivers on duty for every shift?
  • Is there a Registered Nurse on each shift?
  • Does the staff receive on-going training?
  • Is there a resident doctor? Are you required to use him or may you use your own?
  • What specialist medical services are available e.g. doctor, podiatrist, occupational therapist, physiotherapist?
  • Have senior staff and management been trained in institutional management and care of the elderly and frail?

SAFETY AWARENESS, EMERGENCY PROCEDURES

  • Is there adequate lighting in the home?
  • Are there safety rails in the corridors?
  • Are the floor surfaces non-slip?
  • Are there easily accessible panic buttons, especially in the bathrooms?
  • Is there a disaster plan for evacuating the home?
  • Are there visible and accessible fire hydrants?
  • Are there smoke alarms?
  • Do they have regular fire drills in the home?
  • What emergency medical equipment is available on the premises?
  • Are there procedures to deal with elder abuse?
  • What part does the family play in these procedures?

BEDROOMS

  • Is there a view from the room?
  • Is there adequate lighting?
  • Is there a problem with damp in the room?
  • What personal furniture and belongings are allowed?
  • Is it a single or double room?
  • Are the rooms shared? What happens if someone does not like the person with whom s/he is sharing?
  • Is there an emergency bell in the room?
  • Are there enough cupboards and drawers in the room?
  • Is the resident allowed to have a kettle, toaster etc in the room?
  • Are there enough plug points for bedside light, kettle, hairdryer, radio, TV etc? If not, are adaptors allowed?

WHAT ADDITIONAL SERVICES ARE PROVIDED BY THE HOME?

  • Podiatrists (foot care)?
  • Hairdressing facilities?
  • Tuck shop or canteen?
  • Day clinic/examination room?
  • Are there activity rooms?
  • Is there a regular activity programme?
  • Taking into consideration their capabilities, do frail residents receive physical and social stimulation?
  • Are residents encouraged to learn new skills?
  • Are outside trips, outings or shows arranged?
  • Is there any community involvement?
  • Does the home use volunteers?
  • Is the laundry done on the premises or contracted out?
  • Compiled by Lindy Smit, Loraine Schirlinger and staff of the national office
Dressing and personal care

Dressing and personal care

Your approach to personal care should always take full account of the feelings and dignity of the person you are helping. People with dementia cannot always tell you if they feel embarrassed. Personal care must be given to the individual; it’s not just a matter of tasks that must be completed. Respect his/her feelings at all times.

The routine of dressing can become quite tiring, so try to make it as pleasant as possible. It is much easier to just dress the person and get it done with, than to spend time trying to persuade him to dress. It is important for the person’s physical and mental health, however, to encourage the person to do things for himself for as long as possible. As the disease progresses, he may need more help.

Help keep the person’s sense of identity by giving every opportunity for him to make a choice. Life is about choices. A danger of caring for people with dementia is that it is easier to make the choices for them, or we do so without realising it, thinking we are helping them by telling them what to do.

General Tips

  • Put away clothing that might cause confusion, e.g. put away winter clothes during the summer.
  • The day starts with getting out of bed and changing from pyjamas into day clothes. This helps the person to realise that it is now daytime.
  • Give him or her a reason for getting up and getting dressed.
  • Make sure that dressing takes place in private.
  • If needed, give simple instructions e.g. ‘Now put your arm through the sleeve’.
  • If the person does not want to get up or get dressed, try to find out the reason and leave it for a while, rather than causing more distress.
  • Ensure that there are no distractions in the room.
  • Try to warm up the room before getting the person up.
  • Try to keep to a dressing routine that the person is used to.
  • The person may like to be left alone whilst dressing as it embarrasses him or her to dress or undress in front of someone else.
  • Begin the task for the person, if necessary.
  • Give people with dementia time. Give help only once they have gone as far as they can go. Avoid taking over.
  • Pain may also put them off getting dressed as they might have hurt themselves, be suffering from arthritis or even feel ill.
  • Do not make a big deal of behaviour that really is not a problem. It should not matter if the person puts the dress on back to front or wears three dresses at the same time, unless she’s going to be seen in public and you do not want her to be made a fool of. If family or friends are visiting, just explain the situation to them and how it is more important that she made the choice and dressed herself, than how she looks.

A possible simple routine

  • Ensure that the way you present yourself is friendly, calm and relaxed, with a smile on your face, even though you might have woken up in a bad mood or are, yourself, under pressure.
  • Begin the conversation with orientating information, which means identifying yourself, and calling the person by name.
  • Create a relaxed atmosphere by beginning the conversation socially so as to win the person’s trust, which will make the task much easier. Spend time talking before you begin, e.g. ask how s/he slept, discuss the weather or family members, or look at photographs and talk about the people in them.
  • Give the person clothes to choose from that are to his or her taste – our clothes are part of our personality. Take two suitable items out of the cupboard and ask which one s/he would like to wear. Show one item at a time. If neither is liked, take out another two. Do not give too much choice at one time as this may cause confusion. Humour or gentle teasing can also be used.
  • Put the clothes out in the order that they will be put on and then leave the person to carry on, coming back now and again to see if help or encouragement is needed.
  • If the person needs more help, give instructions in short steps, doing one task at a time. If an item is put on incorrectly, have a laugh while you correct it. Once the clothes are selected you can comment on how nice the outfit will look for the daughter who is coming, or for the tea party or any other function that might be looked forward to. It might just be sitting in the lounge or garden.
  • Looking good helps us to feel good. Having hair styled and make-up put on, plus a dab of perfume or a piece of jewellery, plays just as important a role in dressing as do the clothes. Women who used nail varnish might enjoy having their nails done. Men may need to be reminded to shave. An electric razor would help maintain the independence of this task for longer. Beards and moustaches will also need trimming.
  • Compliment the person on how nice s/he looks, to encourage her or him to be proud of her or his appearance.

Clothing tips for easy dressing

  • If the person knows how to use Velcro, it is worth replacing zips with Velcro, especially the fly-zip on men’s trousers and the zips on skirts.
  • Buy slip-on shoes or those that do up with Velcro, rather than lace-up shoes.
  • Boxer shorts are easier for men than the conventional shorts, as are tracksuit pants rather than trousers. This will only work, however, if the items chosen are according to the person’s taste.
  • Buy clothes that are easy to manage such as clothing with front fastening or without any fastening at all.
  • For a woman, front-fastening bras are easier to manage. Do not let a woman who is used to wearing a bra, go without one, as she will be uncomfortable and it can also lead to soreness.
  • Discourage the use of slippers whilst active during the day as they do not give enough support and the person might slop around in them, increasing the risk of falling.
Washing and Bathing

Washing and Bathing

Most adults like to wash on their own when no-one is around to watch them. When looking after people with dementia, you need to remember this and only help as much as you have to. It is important to respect their need to be on their own and let them wash themselves for as long as they possibly can.

Try to bath or wash people at the same times that they usually did it themselves. If they bathed at 5pm, try to bath them at the same time. Also, find out what they usually put on after bathing, as some people dress in their pyjamas even though it is still early.

As the disease gets worse, some people need to be reminded to bath or wash. At times you might also find that some refuse to bath or wash even though they were once very clean people. When this happens, you will need to try very hard to talk them into bathing/showering, or standing at the basin to wash.

Reasons a person may not want to bath or wash

  • Scared of falling
  • Scared of being left alone in the bathroom.
  • If showering, the spray might be too hard on the person’s skin.
  • The person might feel ashamed if s/he was incontinent and does not want you to see the mess.
  • Does not want you to bath her/him.
  • The room is too cold
  • The room is too dark
  • Does not like to be seen without clothes on
  • Does not like showering
  • Does not like bathing
  • The water in the bath feels too deep
  • Lying in the bath hurts (especially if the person is thin)
  • Likes to undress in the bedroom, not in the bathroom.

Preventing accidents in the bathroom

  • Make sure that the floor is dry
  • Make sure that the room is warm before s/he gets undressed
  • Make sure that the temperature of the water is not too hot
  • When filling a bath, always run the cold water first in case the person climbs into the bath when you’re out the room
  • Make sure that the person cannot lock the bathroom door from the inside. S/he may have an accident, or forget how to unlock the door and you will not be able to get in to help
  • Always let the person stand on a rubber mat so that s/he does not slip
  • If you do not have a rubber mat, put a coloured towel at the bottom of the bath to stop the person from slipping. It will also help her/him to see the bottom of a white bath
  • Putting a stool (not wooden) in the bath or shower for the person to sit on will make that person feel safer
  • Never leave a confused person alone in the bathroom
  • Rails attached to the wall next to the bath or in the shower that s/he can hold onto will help to stop the person from falling. If a rail is put against the walls next to the toilet, the person can use the rail to pull her/himself up from the toilet seat.

Tips for bathing and washing

  • Try to make bath time a nice time to spend together
  • Talk to the person and say what you are doing as you bath her/him
  • Do not be bossy and order the person to bath. Talk about how nice it will feel to be clean and look nice for visitors or the family, or for going out
  • Stay calm and try to get her/him to wash, without fighting. If the person does not want to bath just then, leave it for a while and try again later
  • Make sure everything is ready before you start bathing the person and help her/him put out the clothes to wear after the bath
  • If s/he is very confused, it might be better to get everything ready for the bath and then say that you will help her/him to start getting undressed
  • People who do not like being undressed can be washed in their underwear and then dried and dressed with a towel wrapped around them
  • Check the skin for any sores, marks or bruises and report it to the nurse or someone in the family
  • Use soap that does not smell too strong or it will make the skin dry. Make sure that all the soap is rinsed off. Never put bath oil in the bath water because it will make the bath slippery and the person will fall
  • If you shower the person, start at her/his feet and then go upwards
  • Do not wash the person’s hair when s/he is bathing or showering
  • Give her/him the facecloth and soap. Let the person do as much as possible, only helping when help is needed
  • Make sure that the hands and face are washed, under the arms, between the legs and, for a woman, under the breasts
  • Make sure that the person is dried properly, especially under the arms, between the legs and, for a woman, under the breasts, or sores will develop
  • If the skin is dry, put on a cream. If the person doesn’t want a particular cream, “Aqueous cream” is the best