Frequently Asked Questions
This section of the site will be populated by frequently asked questions from the general public, answered by dementia experts.
- What is person centred dementia care?
- Can early intervention really help people to live better?
- I have someone in the community who does not want to know their diagnosis but best practice seems to be that we tell people their diagnosis? Community RGN
- What is a Dementia Friendly Community (DFC)?
- How do you deliver person centred care when you walk into a house where the wife wants one thing and the husband wants something else?
- I work in a nursing home and two of the residents seem to be forming an intimate relationship – what should we do?
- We have a patient who is wandering a lot. We don’t mind that but he gets himself into trouble – what can we do?
- I work in a nursing home, we have one lady who calls out for help to find her belongings all the time. It really annoys the other residents. What should we do?
- I’ve a client who is expressing lots of anger to us when we go to help her with a wash in the morning. She calls us names and will occasionally hit out.
- I am an RGN in the community. A person with dementia who I care for has recently become unsafe on the stairs so his bedroom was moved downstairs – since then his sleep has become very disrupted and so too the carer’s. What should I do?
The underpinnings of Person-centred care constitute the basic framework that all health care professionals should aim to follow in their practice as carers for people with dementia. The American psychologist Tom Kitwood was the first to highlight the value of relations to people with dementia in the theory of Person-centred care (Kitwood 1997). The principles underpinning Person-centred care include valuing the person and their family and treating people with dementia as individuals with perspectives and wishes that should be respected by those providing care. He placed major focus on the importance of continuity of positive relationships and social interactions throughout the dementia journey, inclusive of interactions with health care staff. He believed that these interactions, along with other psychosocial factors including personality, biography, and physical health, could help offset neurological decline (Kitwood 1997). Person-centred dementia care is a good starting point for high quality care, with principles highlighting that people with dementia continue to experience emotions, including pleasure and distress, in response to things they enjoy or dislike.
We have strong enough evidence to answer this question – YES. However it is a little complex. First ‘early’ intervention requires early diagnosis and this may mean different things to different people. Some people suggest the earliest time possible for diagnosis is best, but the trend in the research seems to be to talk about timely diagnosis – at the right time for the person and their family. This is not defined other than by the person and their carer, when the problems they are having are eclipsed by their own coping mechanisms.
Some studies have found that with early intervention people with dementia stay on average one year longer in the community. We have to be sure if that is our goal, or if quality of life and well being are our goals. We need a lot more evidence about what sort of supports help which people best and at what stage after a diagnosis. Supports that have been found very useful are dyadic (or couple based) education and support groups, individualized memory remediation and Cognitive Stimulation Therapy.
This is a very difficult situation but it is important to be clear: Whilst people have a right to know their diagnosis, they also have an equal right not to know their diagnosis. The crux of this is that the position needs to be established before the testing begins, otherwise it becomes a very complex minefield of ethical dilemmas. Before someone has any testing they should be informed what the tests are about and asked if they are willing to have them and if they would like to know the results or would they like their relative to know the results.
Sometimes the words Alzheimer’s and Dementia are very difficult and while euphemisms are not always a good thing, one way to address this may be to say “if you had a memory problem that was going to get gradually worse over time, would you want to know’.
In a study by Julian Hughes he found that when people are asked if they would want to know about dementia, the overwhelming majority said yes they would like to know. When the same people were asked would they tell their relative, a significant proportion said they would not tell their relative because they would want to protect them. We have to be very clear whose rights we are upholding in these situations – a reasonable question to ask yourself is ‘if that was me would I want that information to be withheld?’ Then of course you have to consider what evidence there is that the person with dementia wanted the information to be withheld. These are very complex ethical cases and need team decision making to take what is sometimes the best decision from a difficult set of alternatives.
The Dementia Friendly Community movement parallels the ‘age friendly communities’. The concept of an age-friendly community was developed in 2007 in a project called the WHO Global Age-Friendly Cities project. According to WHO (2007), an age-friendly city is one in which:
“…service providers, public officials, community leaders, faith leaders, business people and citizens recognise the great diversity among older persons, promote their inclusion and contribution in all areas of community life, respect their decisions and lifestyle choices, and anticipate and respond flexibly to ageing-related needs and preferences.” (WHO, 2007).
While there are clear similarities between age friendly and dementia friendly communities, dementia specific awareness and understanding (combined with appropriate interpersonal skills) is essential in ensuring a person with dementia’s well-being and inclusion in their community.
Many people with dementia have described the ‘stuff of life’ as, being able to use buses, the local shops, banks, post office, pubs, libraries, leisure centres- the same things they had always used and which “connected” them to their communities’ (Alzheimer Society of Ireland, 2011).
DFC’s aim to take away barriers and put in place enablers for people with dementia living in their own communities, making use of their natural supports and networks. With minimal support, coaching, information giving etc., these natural supports can sustain a person with dementia for much longer than is currently the case.
This is a very difficult question and requires some thinking through. The more you can be prepared for this situation the better, as walking into this setting without knowledge of the conflict is always going to be challenging. However, sometimes situations develop unexpectedly. Person centred care would say we should respect the rights of the person with dementia – let’s say, to go to bed at whatever time they choose. But when that right directly impacts on the career who is exhausted and wants the person to go to bed so that he/she can sustain themselves to support the person with dementia, it becomes complex. Helping can take some careful mediation skills, which is not a part of training for many professionals. I would say the first thing to do is to acknowledge the conflict and validate both people in their anger at the other. Then you might have them come up with some solutions to the problem – a compromise or a different solution – a creative response. The key is keeping the couple at the heart of the decision making – not so they feel like the solution is their decision, but so it is their decision.
Well, first of all sex is a normal human need – the same as thirst and hunger etc. we have libido. If we can see it as such then that helps. For many people talking about sex is still something they are getting used to. In my experience these issues are difficult and so require talking about but, because of our embarrassment we sometimes don’t talk about them. The result is sweeping under the carpet one of the most fundamental aspects of life. This is to the detriment of the personhood of the individuals whose issues we sweep under the carpet. Person centred care is empty rhetoric when only some parts of the person are recognised and others are held secret.
Remember when your own attitudes and beliefs suggest solutions counter to the wishes of the resident you do not have to alter your beliefs and values, but the beliefs and values of others have to be respected. ‘Its not about our views… but their civil rights… we’re here to create an environment that allows grown-ups to do what grown-ups do.’ Bonfazi (2000 p 24). In the absence of a cure… the most significant thing we can do is adapt our approaches with each change in symptom to make life as meaningful and satisfying as possible. Ageism: Sex, old age and dementia – is a triple jeopardy.
However, there are complex considerations that need to be taken into account. A person has the right in or outside of a relationship not to be abused or to participate in an activity that is no longer satisfying or is upsetting or frightening. Sexual behaviour in a nursing home also differs in significant ways to such behaviours at home -it is no longer a private matter, but in one way or another has an impact on staff, other residents and the families of residents.
Assessment: assume there is a valid need to be met, then consider:
- Is it a sexual need or expressing another need or underlying issue– e.g. need to touch/comfort, boredom, control, self esteem?
- Is it ‘our’ moral problem?
- Is it a family issue?
- Are both people expressing ‘yes’ or ‘no’ (to what extent is there mutual consent)?
- Are we expecting more consent than we would from others?
- What is the past history of the individuals involved?
The response should follow the assessment. At the end of the day, TALK about it – get over inhibitions. Agree the policy and discuss it with staff and family. Support staff. Never shame or scold the person – this can have a catastrophic effect.
Its great to think about wandering in a more person centered way. Wandering seems to say that the person has no purpose. On the contrary, I visited a Nursing Home recently where a ‘wanderer’ was very direct as she asked me ‘could you help me find the way out, its very difficult to find the door’. I would suggest she had great purpose. The key to thinking about the ‘walking about’ is working with the person to find out what they are trying to achieve. Below are some common categories:
- Exit seeking behaviour – repeatedly attempting to leave the ward or unit.
- Modellers – shadowing or following other patients or staff members.
- Self stimulators – these patients are bored or under -timulated and may pace or wander around the ward or unit.
- Akathisiacs – these patients are restless as a side effect of certain medications (Lawlor 1995).
The category may suggest an intervention that might be more appropriate than just sitting the person back down e.g. modellers can be given a role, involved in some action that helps them feel a part of the community in which they are staying. They may need a lot of validation as they may feel very anxious and lost – socially lost – like at a party when you don’t know anyone and everyone is in groups talking. Exit seekers too are probably acting on anxiety – you might validate their anxiety and then find out where they need to get to.
In situations where the person is repetitively asking for something like their belongings, or even another person, it is important to find out exactly what it is. The person might narrow down the belongings to jewellery or clothes or money or newspaper. If it’s items like jewellery it might be as simple as making sure the person gets to wear their jewellery every morning. If however, the person is referring to items that are not in the nursing home, or simply items from the person’s past or even a person (husband or wife that aren’t there) expanding space rehearsal might work.
Not being able to have these items, or their loved one, might cause the person with dementia anxiety, to the point that they will call out for help or repetitively call the person’s name. Expanding rehearsal works by identifying that anxiety and reassuring the person about it before it reaches the point where they are calling out for help.
The technique works by measuring the time space it takes to call out for help finding an object or a person. The initial measurement can be as low as every 2-3 minutes. From then on the aim is to expand that time space by reassuring the person before the measured time is up. For example if the person with dementia calls out for help in finding their belongings every 3 minutes, the person needs to be reassured before the 3 minutes is up (before they call out for help) by saying to them things like “don’t worry all your belongings are safe in your room or in your house” at 2 minute intervals. For the first while this should be repeated every 2-3 minutes and after that gradually expanded by adding an extra minute or two. Eventually this should lead to intervals of 30 min and even up to an hour before the person with dementia feels anxious about their belongings or loved ones and needs to be reassured about them.
Well done for realizing that the anger is happening in response to the intimate care – that is a very big step in the right direction. Having someone attend to intimate care can be a very strange and frightening thing for a person with dementia. They can feel attacked or violated. The most important mantra is that ‘there are always options’. That you can come back and try another approach in a little while, try care in a different order – breakfast first then wash? Some people are scared of water – it is important to gather information from family as well as the person with dementia (what they are telling you is very real – they are not liking what you are doing to them). What can often help is going slower, making eye contact and talking softly and clearly about what you are going to do. However, the best approach is individual and you have to negotiate that with the person.
What really might help in these situations is validation at the point at which the anger is being expressed.
Validation therapy is not only a useful technique for communicating with the person with dementia, but also a technique to find peace and clarity within ourselves during situations which may be testing our patience. Practicing the validation skills including centering, clear low tone of voice, maintaining eye contact, touch and care and polarity can be useful in situations like this.
Centering, which involves stopping the inner dialogue and deep breathing, will enable the carers to be calm and focused on the person with dementia, rather than their own problems (I need to finish this wash in 15 minutes because I have another three to go before breakfast). This will enable them to acknowledge how the person with dementia might be feeling in that moment (threatened and frightened) and respond to these feelings with more validation skills.
Using low clear tone of voice may help in preparing the person with dementia for what is about to happen. Saying things like (How would you feel if we help you to have a wash so you can feel fresh for the day?). When explaining to the person what is about to happen it’s also important to maintain close eye contact. This will help the person to build trust and more than likely, willingly accept the help. Continuing this communication during the time the intimate care is happening can also help ease the person’s anxiety (How is that water for you, doesn’t this shampoo/soap smell lovely? Is it ok if I wash your hair for you now?) Once the person has put their trust in you it’s important not to break that in any way. The validation skill of touch and care shows how people with dementia are likely to respond to the way they are touched while helping with their hygiene. For example when washing their hands or face they might enjoy a little massage. The skill of polarity can also be useful as it should help the person with dementia themselves realise it’s not the worst feeling/situation they know. Asking questions like “is that the worst wash you ever had?” might bring back memories of washing in cold water etc. and suddenly appreciate the wash they are currently experiencing. Please see the link to validation skills being used by Naomi Feil http://www.youtube.com/watch?v=CrZXz10FcVM
Have a look at the room he is sleeping in – is it anything like a bedroom? Would a small night light help? Is there a mirror? Sometimes mirrors are confusing for people with dementia especially in the half light, perhaps move it. What is his activity in the day like? Can it be improved – could the physio help here? Does there need to be more social interaction in the day? How might that be achieved? What is his caffeine intake like? Is there a regular sleep pattern of rising and falling to sleep at a regular time? If not could that be established? Could they get a regular routine before bed – hot drink, listen to some music etc. Obviously this is a lot of change, you can’t ask a carer to do it all at once. I’d start with the environment and work up from there. Try to get the carer to take control, get them to empathize with the person with dementia waking up feeling disorientated and see what would help. Sleeping tablets are a last resort and should only be taken in the full knowledge that over time they will probably negatively impact on cognitive and physical health.